If~ou would like mow information on the "Healthy Children Ready to Learn" Initiative, the Conference on "Healthy Children Ready to Learn: The
Critical Role of l'arents." or the six Sational Education Goals, please contact one of the following agellcies:

Department of Health
and Human Services
200 Indeprlldcllre ;\\r.. s.\\-

Department of Education
400 M:II+II~ .k., S.W.
Washington, DC 20202
(202) 401-3000

National Governors' Association
444 N. Capitol St., S.W.
Suite 250
Washington. DC 20001
(202) 624.iJOO

Department of Agriculture
14th St. & Independence Ave.. S.IV.
\Vashington. DC: 20250
(202) 520-259 I


spedc out
for America's

Children

---      1 -ea.rlT --

The Critical Role
of Parents
February g-12,1992


* Administration for Children and Families, U.S. Department
of Health and Human Services
* Food and Nutrition Service, U.S. Department of Agriculture
* Office of Elementary and Secondary Education, U.S.
Department of Education

* Health Care Financing Administration, Department of
Health and Human Services

* Intergovernmental Affairs Office
Ir U.S. Public Health Service, Department of Health and
Human Services

or Alcohol, Drug Abuse, and Mental Health
Administration

  Office for Substance Abuse Prevention

* Centers for Disease Control
National Center-for Chronic Disease Prevention and Health
    Promotion

National Center for Environmental Health and Injury Control
  National Center for Prevention Services

* Health Resources and Services Administration
  Bureau of Health Care Delivery and Assistance
  Maternal and Child Health Bureau

* Indian Health Service

* National Institutes of Health
National Institute of Child Health and Human Development
  National Institute of Dental Research
* Office of Disease Prevention and Health Promotion

* Office of Population Affairs


*


*

*

*


*

*

*

*

*

*

*

*

*


*


*


*


*


*

*

*


*

*

*

Alliance to End Childhood Lead
Poisoning
American Academy of Pediatric Dentistry
American Academy of Pediatrics
American Association of Public Health
Dentistry
American Association of School Health
American Dental Association

American Dietetic Association

American Medical Association

American Nurses' Association
American Public Health Association
American Public Welfare Association

American Red Cross

American School Food Service
Association

Association for the Care of Children's
Health

Association of Maternal and Child Health
Programs
Association of State and Territorial
Dental Directors
Association of State and Territorial
Health Officials
Child Welfare League of America, Inc.
Children's Action Network
Federation for Children with Special
Needs

General Federation of Women's Clubs

Girl Scouts of the U.S.A.
Healthy Mothers/Healthy Babies
Coalition

*

*

*

*


*


*


*


*

*

*


*

*


*

*

*

*

*

*

*

*

*

*

Home and School Institute
Institute for Educational Leadership
La Leche League International
March of Dimes Birth Defects
Foundation

National Association of Community
Health Centers, Inc.
National Association of Elementary
School Principals
National Association of Pediatric Nurse
Associates and Practitioners
National Association of Social Workers
N.ational Association of WIC Directors
National Center for Clinical Infant
Programs
National Center for Educational Statistics
National Commission to Prevent Infant
Mortality
National Congress of American Indians
National Dental Association
National Head Start Association
National Health/Education Consortium
National Mental Health Association
National Parent Network on Disabilities
National Parent-Teachers Association
National SAFE KIDS Campaign
National Urban League
Parent Action

* Parents as Teachers National Center
+ Society for Nutrition Education
jl- United Way of America


Dedication

The Critical Role
of Parents

T here are 64 million children in this country. When I was appointed to be
   Surgeon General, I vowed to speak for all of them-whether rich or poor,
   healthy or sick, whatever their race or ethnic background. To this end,
nearly 2 years ago, I established the Healthy Children Ready to Learn Initiative.
This Initiative, which focuses on the health aspects of school readiness, was born
out of the President's first National Education Goal, that "By the year 2000, all
children in America will start school ready to learn."
  As part of this Initiative, the Conference on Healthy Children Ready to
Learn: The Critical Role ofParents was held here in Washington, DC, in February
1992. More than `700 people attended- health professionals and administrators,
teachers, Government officials, and others involved in the health and well-being
of our Nation's young people-but our guests of honor for this Conference were
the approximately 225 parents who attended from each of the 50 States, the
District of Columbia, and the U.S. Territories.

  Over the course of those 3 days, our time was spent listening to and learning
from one another. We learned what worked; we were told what didn't. The
Conference was unique in that the parents spoke from their hearts. They raised
a collective voice that said, in effect, "As parents, we must stand up for our children
and our families and see that our needs are met. We must do so with dignity, and
we must demand respect when others try to rob us of our dignity." Parents who
never knew that they could speak for others eloquently articulated the needs of
children and families. Although these parents came to our Conference from all
parts of the country and from all walks of life, they came with the same mission:
to improve the lives of the children and the families'of this country.

  This proceedings document is dedicated to those parents who attended our
Conference. We are proud of them and inspired by them. It is our sincere hope
that what we learned in those 3 days is reflected honestly in these pages. This
document will serve as a "guide" for the rest of us and as an inspiration to do what
was asked. As I stated at the close of our Conference, `This Conference may be
ending, but what we have accomplished is the beginning of a way of acting and
thinking with families in mind."

iv Parents Speak Out for America's Children


  We must care for our children. That responsibility does not belong to only
one individual or entity or Government agency. What we learned at this
Conference is thatwe are all responsible for all of the children. We must become
advocates for one another and share our strengths. When President Bush
outlined his six National Education Goals, he envisioned an America where our
children can compete on an international level. He knew that the children of
today are the explorers, the writers, the teachers, and the inventors of tomorrow.
If we invest in their future today, we can ensure their growth and advancement
for tomorrow.

  As Surgeon General, I will speak for you, the
families of America. My voice and my office are at
your service. I thank you from the bottom of my
heart for your thoughts, your energies, and your
heartfelt spirit.

Surgeon General

Report of the Surgeon General's Conference  v


Contents

Dedication                                                 iv

Executive Summary

Chapter 1 * Introduction

13

Chapter 2 It Charge to the Conference, Antonia C. Novello, M.D.,
M.P.H., Surgeon General

19

Chapter 3 * Parents Speak Out: Summary of Parent Work Groups    27

National Consensus                                          30
  Findings at a Glance                                      30
Awareness of and Entry into Health, Education, and Social Service Systems     32
Participation in Health, Education, and Social Service Systems            36
Transitions Through Health, Education, and Social Service Systems          39
  Programs That Parents Grade At                               43

Regional Issues                                              44

  Region 1                                               44

  Region 2                                            46

  Region 3                                            48

Region 4

50

Region 5                                            52

Region 6                                             54
Region 7                                             56

Region 8                                             58
Regions 9 and 10                                          60

Native American Families                                  62
Migrant Families                                         64

Chapter 4 jr Presentation of Findings
Parent Representatives
Awareness of and Entry into Health, Education, and Social Service Systems
   Sherlita Reeves, Parent Delegate from Arkansas
Participation in Health, Education, and Social Service Systems
   Ellie Valdez-Honeyman, Parent Delegatefiom Colorado
Transitions Through Health, Education, and Social Service Systems
   Larry Bell, Parent Delepte from Delaware
Responder Panel
James 0. Mason, M.D., Assistant Secretary fo1 Health, U.S. Department of
    Health and Human Services

67

68



68



70


73

78


78

vi Parents Speak Out for America's Children


John T. MacDonald, Ph.D., Assistant Secretary for Elementary and SecondaT
Education, U.S. Department of Education
Catherine Bertini, Assistant Secretaly for Food and Consumer Services,
U.S. Department of Agriculture
Wade Horn, Ph.D., Commissioner, Administration for Children, Youth and Families,
U.S. Department of Health and Human Services
Christine Nye, Director, Medicaid Bureau, Health Care Financing Administration
Lou Enoff, Principal Deputy Administrator, Social Security Administration

80


82


86

88

90

Chapter 5 * Commitment of Our Leaders                      93
George H. Bush, President of the United States                           94
Louis W. Sullivan, M.D., Secretary of Health and Human Services                97
Edward Mad&an, Secretary of Agriculture                             100
Lamar Alexander, Secretary of Education                              103
Roger B. Porter, Ph.D., Assistant to the President for Economic and Domestic Policy      108

Chapter 6 * Panel Presentations

Panel 1A: Early Childhood Issues That Affect School Readiness and Health
Panel 1B: Helping Families Get Services: Some New Approaches
Panel 2A: Healthy Children Ready to Learn: What Are the Roles of Parents,
    Educators, Health Professionals, and the Community?
Panel 2B: Special Issues That Impact Children and Families: Substance
     Abuse, HIV, and Violence

Panel 3A: Disabilities

Panel 3B: Exploring Comprehensive Health and Education Models for
    Young Children
Panel 4A: Children with Special Health Care Needs: Lessons Learned
Panel 4B: Parenting: The Critical Role
Panel 5A: Childcare: Two Perspectives
Panel 5B: Healthy Start, Head Start, Even Start, and WIC: Integrating Health,
    Education, and Social Service Programs

111

112

115


116


120

122


125

127

130

134


136

Chapter 7 * Closing Remarks, Antonia C. Novello, M.D., M.P.H.,
Suqem General

139

Appendix A: Conference Participants                               A-l
Appendix B: Advisory Group                                       B-l
Appendix C: Planning Committee                                C-l
Appendix D: Agenda at a Glance                                  D-l
Appendix E: Facilitators and Recorders                              E-l
Appendix F: Workshops                                       F-l
Appendix G: Exhibits                                         Gl
Appendix H: Entertainment                                     H-l

Report of the Surgeon General's Conference  vii


Executive
summary


Executive Summary

0 n February g-12,1992, in Washington, DC, Surgeon General Antonia
    Novello hosted the `Healthy Children Ready to Learn: The Critical
    Role of Parents" Conference, sponsored jointly by the National Gover-
nors' Association, the Department of Health and Human Services, the Depart-
ment of Education, and the Department of Agriculture. The S-day Conference
was part of the Surgeon General's Healthy Children Ready to Learn Initiative,
developed in support of the first of six National Education Goals established by
President George Bush and our Nation's Governors in February 1990. This goal
states, "By the year 2000, all children in America will start school ready to learn."
  At the Conference, approximately 225 parents, representing the 50 States,
the District of Columbia, and the U.S. Territories, joined with more than 500
government officials and representatives from public and private health, educa-
tion, and social service agencies to search for new ways to advance the health and
education of America's children. The parents were selected by their States and
Territories to represent their area's economic, social, and cultural diversity.
Parents from diverse backgrounds and other participants directed their efforts
toward these challenging goals:

* To identify the strengths of parents and families in their roles in preparing
children to be healthy and ready to learn.

* Tovoice parent and family needs to the health, education, and social service
professionals responsible for programs that address the goal of preparing
children to be healthy and ready to learn.

                       * To highlight Federal, State, and community-based programs that effectively

                    -_         address these needs.

                    
                   .-      * To identify cross-cutting public/private/voluntary strategies that build a
                   _,       parent-and-family/professional partnership within the scope of existing
                        ._
                 -:-
                 ;-       programs.

  -r j -- `= ;_  - -_ .- 1                   - _  `2
      _. -.
  -I;.~,                                 ,~---
    >v
"By t&qear 2000, all childreh- in
America%11 start school ready to
learn."

2 Parents Speak Out for America's Children


Executive
Summary

D uring the Conference, the State Parent Del-
    egates attended Parent Work Groups to dis-
   cuss three phases of involvement in health,

education, and social service systems (the patchwork of
health, education, and social service programs and
activities throughout our Nation): awareness of and
entry into the systems, participation in the systems, and
transition as families move through the systems. The
delegates were grouped into Parent Work Groups by
regions, and special Work Groups were established for
Native Americans and Migrant families to ensure that
their issues were not lost. (The Native Americans and
Migrant families were also represented in the Regional
Work Groups.)

  At the close of the Conference, three representa-
tives from the Parent Work Groups (one for each stage
discussed, i.e., awareness and entry, participation, and
transition) reported their findings to the Conference
at large. The issues they raised were addressed by a
panel of Government officials, directors of Federal
programs that administer key health, education, and
social service programs.

  As the State Parent Delegate Work Groups were
meeting, other participants attended presentations by
panels of professionals and parent advocates involved
with health, education, and social service systems. The
focusofthesepresentationswason howtomakeprograms
fit families, instead of making families fit the programs.
The following topics were covered in the panel presenta-
tions: (1) Early Childhood Issues That Affect School
Readiness and Health; (2) Helping Families Get Services:
Some New Approaches; (3) Healthy Children Ready to
Learn: What Are the Roles of Parents, Educators, Health
Professionals, and the Community? (4) Special Issues
That Impact Children and Families: Substance Abuse,
Human Immunodeficiency Virus (HIV), and Violence;
(5) Disabilities; (6) Exploring Comprehensive Health
and Education Models for Young Children; (7) Children
with Special Health Care Needs: Lessons Learned; (8)

Parenting: The Critical Role; (9) Childcare: Two Perspec-
tives; and (10) Healthy Start, Head Start, Even Start, and
the Supplemental Food Program for Women, Inf%nt.s,
and Children (WIG) : Integrating Health, Education, and
Social Service Programs.

  Over the course of the 3 days, President George
Bush and members of his Cabinet expressed their com-
mitment to the Surgeon General's Healthy Children
Ready to Learn Initiative by addressing the Conference
participants. President Bush, Secretary of Health and
Human Services Louis Sullivan, Secretary of Agriculture
Edward Madigan, and Secretary of Education Lamar
Alexander each described the efforts of the Administra-
tion in meeting the first National Education Goal.

  The Conference also provided 28 workshops cov-
ering a variety of health, education, and social topics
from which the participants could choose. During the
breaks, a special exhibition containing information
about Federal, State, and community programs con-
cerned with the health, education, and well-being of
children was open to Conference participants. Also
during the breaks and before the opening session, the
Conference featured entertainment provided primarily
by local children's groups.

   s Surgeon General, Dr. Novello is responsible for
A the health of our Nation's people, and as a
    pediatrician,sheismostpassionatelyconcemed

about her responsibility to our Nation's children. There-
fore, Dr. Novello has made the health of our Nation's
children the cornerstone of her agenda. In her Charge
to the Conference, Dr. Novello stated that the first
National Education Goal hoIds special importance for
her. "Health and education go hand in hand; one
cannot exist without the other," she said. "To believe
any differently is to hamper progress." She cited the
three specific objectives in the comprehensive goals
statement for the first National Education Goal:

Report of the Surgeon General's Conference 3


All disadvantaged and disabled children will have
access to highquality and developmentally appro-
priate preschool programs that help children pre-
pare for school.

Every parent in this country will be their child's
first teacher and devote time each day helping his
or her preschool child learn; that parentswill have
access to the training and support they need.

* Children will receive the nutrition and health
care needed to arrive at school with healthy minds
and bodies, and the number of low-birth weight
babies will be significantly reduced through en-
hanced prenatal health systems.

  Dr. Novello spoke about some of the barriers that
our country faces in developing healthy children ready
to learn: failure to immunize against childhood dis-
eases, Acquired Immunodeficiency Syndrome (AIDS),
childhood injuries, and violence. She stated that, al-
though the statistics are staggering, she is hopeful that
we can make a difference. She announced her commit-
ment to the arduous task and challenged the Confer-
ence participants: "I see our task as improving the
health and welfare of our Nation's children in everyway
we can." She urged the participants to work together,
to teach and to learn from one another. `When it comes
to health and education," she said, "we need total
intuitive conviction to remove every barrier and reach
every child." She urged the parents and professionals
present to help make the Conference "a blueprint for
bonding education and health-an essential task, ifour
children are to succeed."

I n their discussions of the stages of involvement with
health, education, and social service systems (aware-
  ness and entry, participation, and transition), the
parents examined three main questions related to the
different stages:

* What is my role as a parent?

* What are the barriers and issues of concern?

* What are some solutions and existing model pro-
grams incorporating those solutions?

Several issues and themes recurred in the parents'
discussions, forming a kind of national consensus on
the issues among the parents. The conclusions from
this national consensus follow.

Awareness of and Entry into Health,
Education, and Social Service Systems

Roles and Responsibilities of Parents

First parents must identify their children's needs.
Then, they must find the programs offering services
that meet those needs. They should consider them-
selves full partners with the professionals in making
decisions for their children. Parents should be advo-
cates and should network with other parents to share
information and moral support.

Barriers to Awareness and Entry

Information about the full range of programs available
to families is not readily accessible. In addition, the
bureaucracy devoted to administering mostprograms is
daunting to most parents. The paperwork is over-
whelming, both in volume and in language. Eligibility
criteria are inflexible. Social service workers, who often
suffer from employee burnout or are culturally insensi-
tive, can be patronizing and intimidating. Inflexible
office hours and difficulties with transportation add to
the problem. The systems seem to suffer from a lack of
accountability. Parents feel frustrated and do not know
where to turn for help.

Solutions

An easy-to-read, universal application form for all ser-
vices was a major`proposal, along with consistent, flex-
ible eligibility criteria. Agencies should operate during
hours that are more convenient to working parents.
Programs should be instituted in elementary schools to

4 Parents Speak Out for America's Children


Executive
Summary

develop social competency and effective parenting skills.
Funds should be made available for support groups.
Parents need a way to talk back to the systems. A
campaign should be conducted to increase public aware-
ness of the importance of healthy children.

Participation in Health, Education,
and Social Service Systems

Roles and Responsibilities of Parents
The parents' primary role is to nurture their children.
They should also serve as role models not only to their
children but also to other families who need service,
and they should enlist those families into programs.
Parents need to be fully involved partners with the
service providers-in making care decisions, communi-
cating cultural sensitivities, and evaluating services.

Barriers to Participation

The same difficulties exist here as with gaining access
to the system: paperwork, inflexible hours, transporta-
tion problems, and gaps in service. These problems
seem to stem principally from a lack of coordination
among programs and the absence of a family-centered

philosophy. Again, the parents saw a need for family
support groups and funding to organize them.

Solutions

First, training in parent skills should begin early. Im-
proved communications among agencies would solve
many problems. "One-stop shopping" (i.e., receiving a
multitude of services at a convenient location) with
flexible hours and simplified paperwork would go a
Iongway toward easing parents' burdens. Adirectory of
services also would be helpful. Consistent funding for
programs and parent involvement on the boards over-
seeing programs would help provide quality service. A
`national psychology" that supports families should be
encouraged; i.e., our society must be encouraged to
value the family and support the efforts of parents in
raising their children, particularly for families who
need'help. To that end, people should vote for candi-
dates who espouse that view and who will work to
further it when elected.

Transitions ThmugJl Health, E&x&on,
andSocial5krvi~System.s

Roles and Responsibilities of Parents

Parents need to be active participants in transitions from
program to program because they are the best evaluators
of their children's needs. They must be prepared for and
remain involved in the transition process and, in turn,
prepare their children. Again, they should be advocates
for the child to ensure that the child is truly getting what
he or she needs. Other important aspects of the parents'
role are loving their children and helping develop self-
esteemforthemselvesandfor theirchildren. Forsmoother
transitions, parents must also be good recordkeepers and
request written reports.

Barriers to Smooth Transitions
A lack of communication among agencies regarding
available services complicates the transition process for
families. Reports that are not written in the language of
the parents make transitions confusing. Culturally

Report of the Surgeon General's Conference  5


insensitive service workers isolate parents. Unstable
funding makes it difficult to predict the availability of a
particular program when a transition occurs.

Solutions

Improved communications was one of the most often-
cited needs, along with information clearinghouses,
hotlines, service directories, support groups, and com-
munity outreach. Service providers should receive
sensitivity training. Once again, the parents cited the
need for a streamlined system for handling paperwork,
one-stop shopping, and sensible hours.

Characteristics of Programs
Parents Grade A+

Parents said that programs must have the following
characteristics: be child centered and family friendly,
be easily accessible, have broad eligibility standards, be
antidiscriminatory and multilingual, be well-promoted,
provide individualized service, be staffed sufficiently,
and be open at convenient hours. In addition to having
these characteristics, programs must coordinate with
one another to facilitate entry and participation in the
systems and to avoid duplication or gaps in services.
Above all, programs should empower families as they
serve them. The parents strongly recommended pro-
grams that involve parents directly as a way to empower
them. Furthermore, they stressed that programs should
involve the parents in making the decisions that affect
their children, decisions ranging from policies to sta&
ing and budgets.

0 n the final day of the conference, three repre-
    sentatives from the Parent Work Groups sum-
    marized their conclusions. One representa-
tive focused on the discussions of awareness of and entry
into health, education, and social service systems, an-
other on participation, and the third on transitions.

Awareness of and Entry into Health,
Education, and Social Service Systems

Sherlita Reeves
Parent Delegate from Arkansas

In summarizing the reports from the groups on aware-
ness and entry, Ms. Reeves said that the parents' roles
andresponsibilities should include becoming informed
about their own child's needs, acting as an advocate for
the child, meeting their own needs so that they can be
equal partners with service providers and profession-
als, and networking with other parents.

  The issues of concern were too much paperwork,
difficulty in getting into the system, materials not writ-
ten in parents' language, and providers who do not
understand the culture of those that they serve. Inflex-
ible hours of operation, lack of transportation, and
environmental barriers for physically impaired people
were noted as barriers. A significant problem is the lack
of accountability in the systems.

  Solutions to these problems focused on establish-
ing school-based programs that develop social compe-
tencies, building support networks within the commu-
nity, producing directories of resources with toll-free
numbers, designing one-stop shopping for all man-
dated programs, creating a universal application form,
and giving parents a way to talk back to the system.

Participation in Health, Education,

and Social Service Systems

Ellie Valdez-Honeyman
Parent Delegatejkom Colorado

Ms. Valdez-Honeyman stated that parents need to pro
vide for the needs of their children. Food, clothing, safety,
health care, and quality time are essential, but parents
also need to instill a spirituality that encourages values,
morals, and respect for themselves and for others.

  As families begin to participate in the systems, just as
when they are entering the systems, parents need to continue
to be advocates-for their own children, for other families,
and for components of the systems that work for them. They
should be involved in their communities.

6 Parents Speak Out for America's Children


Executive
Summary

I

  Ms. Valdez-Honeyman related other areas of con-
cern identified by the parents. They felt that a stigma is
attached to receiving services, the stigma of being poor.
Eligibility criteria can also be a problem because they
are not flexible enough to include all who have need.
Also, language not native to the parents and system
jargon make dealingwith the systems confusing. Trans-
portation is an issue in rural areas where services are
limited and parents must travel long distances. Pro-
grams often do not have convenient locations or hours
for obtaining services.

  The solutions identified by the parents fell into
two categories: local initiatives that deal with local
service delivery, and Federal initiatives that reach across
all levels to create a standard in which service systems
welcome and embrace families. The principles would
then be embodied in the design, delivery, and evalua-
tion of services.

Transitions Through Health, Education,
and Social Service Systems
Larry Bell

Parent DebgateJLom Delaware

Mr. Bell provided a laundry list of issues that the parents
had discussed regarding transition. First, parents need
to participate in the transition process so that they can
help prepare their children for the transition. They can

be better prepared for the transitions themselves if a
resource manual or some form of information about
new locations or programs, including contact names,
were available to them before the transitions occur.

  The parents acknowledged their responsibility to
maintain copies of their children's records to ensure
that they are not lost during transitions. The parents
also have asignificant responsibility in ensuring that the
roles of parents and professionals in the transition
process are clarified and that the family is treated with
respect. Programs and staff must be culturally sensitive
and relevant, and they must help develop self-esteem
not only for the children but also for their parents, who
then can be good role models. Parents should not be
afraid to confront the systems if necessary to ease the
transition process.

  The parents stressed that, to ease transitions,
parental involvement in programs should be consis-
tent: Furthermore, parental involvement should in-
clude program design and policy-making decisions.

  Mr. Bell also presented concerns that were raised
by the other representatives. The parents cited the
need for improved communication among the various
systems that serve them in the transition process. Im-
proved communication would help avoid duplication
of services and promote continuity of service as transi-
tions occur. They recommended an interstate com-
puter network to ease the application process as farni-
lies move from State to State. They urged that school
credits be accepted more readily from State to State.
They repeated the plea for one-stop shopping, less
paperwork, flexibility ofservice, and help with transpor-
tation problems. They also promoted the use of school
social workers who could act as advocates for parents
and children in the transition process.

  Finally, Mr. Bell presented the parents' recom-
mendation for legislative action to help improve the
transition process and urged the parents to elect offi-
cials who are family advocates. He summarized his
remarks by reminding the participants of the three C's
of successful transitions: consistency, continuity, and
coordination of services.

Report of the Surgeon General's Conference  7


James 0. Mason, M.D.
Assistant Secretary for Health

U.S. Department of Health and Human Seruices

Assistant Secretary Mason, head of the U.S. Public
Health Service, answered the parents' challenge for
action by the officials by promising to meet with the
State and territorial health departments and their com-
missioners to discuss the issuesraised by the parents. He
reinforced the parents' con tention that leadership must
come from all levels.

  Dr. Mason stated that he agreedwith 98 percent of
what the parents said and his agency is working toward
creating a user friendly system of health care. As an
example he offered a new Model Application Form,
which is a simplified, unified, uniform application avail-
able for use in the States. He stated that both the
Federal Government and the parents want the same
features in the systems, but that each must work from
opposite ends to achieve them at the middle levels
where the programs are implemented.

  He also outlined Healthy People 2000, a national
program with 300 measurable health goals for the year
2000; 170 of these goals relate to mothers, infants,
children, and adolescents. He closed by expressing the
willingness to work together as partners.

John T. MacDonald, Ph.D.

Assistant Secretary for Eknmztaly and Secondary Education
U.S. Department of Education

Assistant Secretary MacDonald said that schools need to
return to things that parents and children need. He
sharedavision ofschools as the hub ofone-stop shopping,
where education is the central mission but where children
and families can use other family services as well. This
facilitywould operate from early in the morning until late
at night, including weekends and during summer and
holidays. It would virtually never close. He also said we
need a massive urban intervention program using Federal
resources in conjunction with State and local resources to
provide for communities.

8 Parents Speak Out for America's Children

  Assistant Secretary MacDonald explained that
many current programs can help one another. He cited
Even Start as an example. A program for children 0
through 7 years old that provides not only parenting
and childcare butalsojob training and placement, Even
Start can be used to buy or expand Head Start services
or to create its own services.  He emphasized that
Federal agencies are working to integrate their services,
and they will continue to do so with the support of
America's families in persuading Congress to make
needed changes.

Catherine Bertini
Assistant SecretaT forFood and Consumer Services
U.S. Dqbartment of Agrkulture

The Department of Agriculture spends more than half
of its budget on food assistance programs for the poor
and children. Ms. Bertini explained how the Depart-
ment currently is working with directors around the
country to promotejoint services for immunization and
WIC. She also described direct certification of school
lunch and breakfast programs through a computer
marriage of the school lists with files from the Aid to
Families with Dependent Children (AFDC) program in
an effort to simplify eligibility factors and expand ac-
cess. The two-signature policy for Food Stamps has
been eliminated and the agency has launched a pilot
program called Electronic Benefit Transfer (EBT) us-
ing bank cards for the food stamp program.

  In closing, Ms. Bertini discussed the importance
of school breakfast for children coming to school ready


Executive
Summary

to learn. Half of the schools that have school lunch
programs also have breakfast, but through expanded
access the schools can feed more kids. She urged
parents to work with and support the regional agencies
that provide services and to help persuade Congress to
support proposals for change in the systems.

Wade Horn, Ph.D.
Commissioner

Administration for Children, Youth and Families
(1.X Dqbartment of Health and Human Services

Dr. Horn admitted that Head Start works because it is
built upon parental involvement and community sup-
port. Head Start also integrates health services and
social services and is one of the largest delivery systems
of health services to poor children in our country.
However, Head Start still has much work to do. It is
undertaking three new challenges: administering more
money to serve more kids; increasing services to adults
with children in Head Start, particularly adult literacy
and substance abuse; and providing job training for
Head Start parents.

  Dr. Horn also warned that Head Start is not an
inoculation against everything that can possibly go
wrong in a child's community. We must do a betterjob
of creating a good environment for children when they
leave Head Start. To that end, he has been working
with Assistant Secretary MacDonald to establish better
connections between Head Start and our Nation's
public schools.

Christine Nye
Director
Medicaid Bureau

Health Care Financing Administration
Ms. Nye described the massive effort that Medicaid makes
to serve our people; it spends more than $100 billion for
services to 30 million Americans, 17 million of whom are
children. She continued that, although Medicaid is
expanding services and eligibility, it still falls short in many
areas. However, she cited some bright spots: expansion
of eligibility for children to the maximum in as many as 20
States and increased flexibility in providing waivers to

keep children with special health care needs at home
rather than in institutions. One expanded program for
children is the early Periodic Screening, Diagnostic and
Treatment Program, the greatest child health reform
since the enactment of Medicaid.

  Ms. Nye also described efforts to make access to
Medicaid easier: streamlining application forms, increas-
ing payments to community health centers, and working
to overcome barriers between physicians and Medicaid.
She expressed her commitment to continuing these ef-
forts, but cautioned the participants that Medicaid is
administered by the States and that the parents should
workwith the State Medicaid staffand inform them of the
findings of the Conference. In closing, she thanked the
parents for rejuvenating her own commitment to imple-
menting changes in the program.

Lou Enoff
Principal Deputy Administrator
Social Security Administration

Although most people think of Social Security as a
retirement program, Mr. Enoff informed the partici-
pants that it pays more than $1 billion to more than 3
million childrenunderitsprogramseverymonth. These
children either have disabilities or they are the off-
spring of retired or disabled workers or deceased par-
ents. Social Security has expanded access with a nation-
wide 800 number that operates 12 hours a day with
bilingual help if the client needs it. In addition, Supple-
mental Security Income (SSI) has an outreach program
to find those people who are eligible. Social Security
has begun integrating serviceswhere possible with other
agencies. Also, Social Security has published standards
of service for its offices, which will be modified as goals
in providing services are met. For instance, Social
Security cards are now issued within 10 days after the
application is filed; the same process formerly took up
to 4 weeks.

  Mr. Enoff urged the parents to call if they have a
problem with or concern about Social Security. He
reminded them of the 800 number and added that, if they
received no satisfaction from the senice providers on the
toll-free line, they could call him directly at 41@%%-9000.

Report of the Surgeon General's Conference  9


George H. Bush
President of the United States

The President said that, in his administration, families
come first. Pointing to the critical role of parents, he
said that, as a child's first teachers, they offer the love
and nourishment that no government program can
ever hope to provide.

  Citing programs that promote the health and
education of young children, President Bush stated
that, since 1988, Federal dollars for immunization have
more than tripled. In the last 3 years, funding for Head
Start has almost doubled; this year's proposed increase
of $600 million is the largest single increase in the
program's history.

  President Bush also outlined the provisions of his
health care reform plan providing a $3,750 tax credit for low-
income families and an equal tax deduction for middle-
income families; cutting costs to make health care more
efficient; and cutting waste and abuse. The President called
it a common-sense reform that will maintain high-quality
care, cut costs, ensure maximum fi-eedom of choice, and give
every Emily access to health care.

Louis W. Sullivan, M.D.

Secretary of Health and Human Services

Secretary Sullivan said we must invest in children. To
support that investment, the President's 1993 budget
proposes to increase funding for programs serving
children to $100 billion. Infant mortality is a national
priority, and an expansion of the Healthy Start initia-
tive will concentrate $143 million on 15 communities
with stubbornly high infant mortality rates.

  We must also focus on prevention. The President
has requested $52 million for immunization activities
and $40 million for Centers for Disease Control (CDC)
Lead Poisoning Prevention Grants to support 30 state-
wide programs.

  Finally, we must empower parents. The President's
$600 million increase in funding for Head Start will
serve an estimated 157,000 additional children in I993

10 Parents Speak Out for America's Children

and will involve their parents. In addition, the tax
provisions of the President's health care reform pro-
posal will help more than 90 million Americans and will
cover 95 percent of the uninsured.

Edward Madigan
Secretaly of Agriculture

Secretary Madigan outlined the many Department of
Agriculture programs that have direct impact on chil-
dren. He cited the following examples: WIC, a gateway
to other government servicessuch asimmunization; the
Child and Adult Care Food Program, which serves
meals to preschool-aged daycare children (including
Head Start meals), a service that is expanding; the
National School Lunch and Breakfast Programs, which
are being cross-matched with AFDC files to ensure that
entitled children are reached; various summer food
assistance programs; Food Stamps, the largest food
assistance program; and various other programs for
distribution of commodities.

  In addition to providing food, the Department of
Agriculture also provides nutrition education through
various programs. The Nutrition Education andTraining


Executive
Summary

Program (NET) trains school food-service personnel,
teachers, and students. The National Food Service Man-
agement Institute, which operates at the University of
hfississippi, trains school-lunch operators. Also, WIG
provides nutrition education as an integral part of its
program. Secretary Madigan urged the participants to
work locally to ensure the success of these programs.

Lamar Alexander
Secretary of Education

SecretaryAlexanderreiteratedtheAdministration'scom-
mitment to Federal standards for quality education. He
recounted the implementation of the Healthy Children
Initiative in Tennessee during his term as Governor. That
program sought to expand prenatal care, iden tifv doctors
for newborns, and encourage employers to provide
childcare opportunities for their employees.

  Secretary Alexander stated that, although na-
tional policies and State programs are important be-
cause they affect funding, the fundamental problem is
a matter of parents, families, and communities taking
care of children and putting a priority on them. He said
the Department of Education now has 27 different
Federal programs that are available for children under
5 or 6years old, but the challenge is to spend the money
more wisely.

  As an example, Secretary Alexander pointed to
the Decatur, Georgia, school district, which has turned
the school community around by setting and enforcing
tough standards and by using the school as the organiz-
ing point to integrate community services for the chil-
dren. In closing, Secretary Alexander encouraged the
audience to assist their communities in becoming part
of the America 2000 program.

Roger 6. Porter, Ph.D.

Assistant to the President @Economic and Domestic Policy
Dr. Porter stated that the President's commitment to
the goal that all children start school ready to learn
permeates his administration. The President's Educa-
tion Policy Advisory Committee, which is made up of
educators, business and labor leaders, and media repre-
sentatives, has spent much time discussing ways to

enhance parental involvement in the health and educa-
tion of our children. In addition, the President has
established a partnership with the Nation's Governors
in adopting the six National Education Goals.

  Dr. Porter stated three convictions that synthesize
the spirit of the National Education Goals. One, fami-
lies come first. Two, we must never allow things that
matter most to be at the mercy of things that matter
least. We, as a society, must honor those activities that
involve one generation transmitting to the rising gen-
eration a set of fundamental values and aspirations,
which incIudes good health and a commitment to
learning. Three, we are all in this together.

I n her closing remarks, Dr. Novello observed that
  everyone came together at the Conference for only
  one purpose: to improve the lives of children and

families. She said thatreforms in the health, education,
and social service systems of this country will be ad-
vanced through the families. It was her belief that the
Conference did one thing beautifully: It vindicated
parents. Parents will no longer be silent partners; they
will be activists and advocates.

  Dr. Novello asked attendees tojoin her in sharing
the responsibility for making their families and chil-
dren well. She reiterated some of the concerns raised at
the Conference:  the importance of fathers in the
family, the need for flexible services and cultural sensi-
tivity, the needs of teenage parents, and the desire for
self-esteem for all of our children and their parents. She
urged the participants to become involved and share
with those at the local and at the State levels, in the
public and in the private sectors. Our children's well-
being is no longer one person's responsibility, and we
must "get real." There is too much at stake.

  This Conference, then, can be just the beginning
of a coalition of parents trying to determine, through
their collective actions, what this Government can do.
In closing, Dr. Novello challenged the participants one
last time. "I'm with you," she said. "Are you with me?"

Report of the Surgeon General's Conference  11


1

htroducticm


Chapter 1

Headytc~ i -earn- --

0 n February 9-12, 1992, at the Ramada Renaissance Techworld in
    Washington, DC, the Surgeon General, Dr. Antonia Novello, hosted
     the "Healthy Children Ready to Learn: The Critical Role of Parents"
Conference. This conference was jointly sponsored by the National Governors'
Association, the Department of Health and Human Services, the Department of
Education, and the Department ofAgriculture. The Conference was held as part
of the Surgeon General's Healthy Children Ready to Learn Initiative, which in
turn supports the first of six National Education Goals established by President
George Bush and our Nation's Governors. This goal states, "By the year 2000, all
children in America will start school ready to learn." Recognizing the crucial role
of parents in ensuring their children's good health and preparing them for
school, Dr. Novello invited them tojoin with Government officials and represen-
tatives from public and private health, education, and social service agencies to
open the channels of communication and to explore innovative steps to support
the care and education of our Nation's children more effectively. Approximately
225 parents, representing the 50 States, the District of Columbia, and the U.S.
Territories, gathered with more than 500 professionals concerned about the care
of children to express the needs of families and explore ways that those needs can
be addressed. Appendix Alists the more than 700 participants of the Conference.

"Providing for health, nourishment,
andz&k parenting are basi&k$s of
providing a suitable foundation for
normal growth and emotional well-
being, a foundation that fosters the
ability to learn and ensures school
readiness. n

14 Parents Speak Out for America's Children


Report of the Surgeon General's Conference  15


T he seeds for the Conference were planted in
   February 1990, when President Bush and the
    Nation's Governors made education a national

priority and established the six National Education
Goals. The first goal is an extremely important one
because it focuses on the foundations of learning:
physical, social, and emotional health and well-being,
and cognitive development.

  Providing for health, nourishment, and active
parenting are basic ways of providing a suitable founda-
tion for normal growth and emotional well-being, a
foundation that fosters the ability to learn and ensures
school readiness. However, deficits in any of these areas
during the critical early period in a child's development
are difficult, if not impossible, to overcome. To achieve
the first National Education Goal, our Nation must
provide access to health care and proper nutrition,
education for parents, and educational programs for all
of our children. In August 1990, through the announce-
ment of her Healthy Children Ready to Learn Initiative,
the Surgeon General accepted the challenge to support
achievement of this readiness goal. Dr. Novello's initia-
tive focuses on the health component of the first Na-
tional Education Goal because children's ability to
learn is dependent on their health.

  To assist her in undertaking this challenge and to
explore the best means to meet the goal, Dr. Novello
formed an Advisory Group of highly qualified represen-
tatives from the White House staff and the Departments
of Education, Agriculture, and Health and Human
Services. (The Advisory Group members are listed in
Appendix B.) The role of the Advisory Group is to
recommend steps to improve the health and well-being
of children so that they are healthy and ready to learn
when they begin school. This role encompasses the
following tasks: (1) determining the health needs of
preschoolers and their parents; (2) identifying Federal
resources that can be used to meet those needs; (3)
discovering gaps where resources to meet the needs are

lacking; (4) clarifjing the relationship between the
Federal Government and the States in meeting these
needs and the responsibilities of each; (5) developing
strategies to minimize barriers to cooperation among
Federal, State, and local agencies and private organiza-
tions involved in the health and education of young
children: and (6) identi@ingways to expand the Nation's
resources through cooperation and collaboration to
meet the challenges of this readiness goal. Among
other recommendations, the Advisory Group advised
seeking parents' perceptions of needs that must be met
if our Nation is to reach the readiness objective.

  The design of this Conference was based on the
Advisov Group's recommendations. The Surgeon
General set these challenginggoalsfor the Conference:

To identi+ the strengths of parents and families in
their roles in preparing children to be healthy and
reads to learn.

To voice parent and family needs to the health,
education, and social service professionalsrespon-
sible for programs that address the goal of prepar-
ing children to be healthy and ready to learn.

To highlight Federal, State, and community-based
programs that effectively address these needs.

To identi+ cross-cutting public/private/volun-
tary strategies that build a parent-and-family/pro-
fessional partnership within the scope of existing

programs.

In preparation for the Conference, the Surgeon Gen-
eral requested that the States identify parents who
would make up a State Parent Delegation at the Confer-
ence. The term "parent" was broadly defined to include
anyone who is guardian of a small child, i.e., parents,
grandparents, adoptive parents, foster parents, etc. The
individual State delegations were asked to hold pre-
Conference meetings to discuss issues relating to health,
education, and social service systems of importance to
the parents.

16 Parents Speak Out for America's Children


T he Conference, which was the result of 18
  months of planning by the Surgeon General and
  her Advisory Group, assisted by the Planning

Committee (listed in Appendix C), provided a unique
c~pportuni~ for parents and families to meet with Fed-
eral, State, community, and private professionals from
health, education, and social service systems. The
;kgenda (Appendix D) was carefully planned to make
tile Conference an effective forum for information
eschange.

  The State Parent Delegates attended three Parent
LVork Groups to discuss their needs and issues relating to
three phases ofinvolvement in the health, education, and
social service systems: awareness of and entry into the
svstems, participation in the systems, and transitions as
t&ilies move through the systems. The delegations were
grouped according to geographical regions, and special
work groups were established for Native American and
Migrant families (who were also represented in the re-
gional work groups) to ensure that their special concerns
were not lost. The Facilitators and Recorders for these
discussions are listed in Appendix E.

  In her Charge to the Participants, found in Chap-
ter 2, the Surgeon General emphasized that these Par-
ent Work Groups were the focus of the Conference.
Chapter 3 of these proceedings summarizes the issues
discussed in the Parent Work Groups. The summaries
examine a broad national consensus from issues raised
in several of the work groups and then explore the
narrow focus of the individual work groups. Chapter 4
contains the findings as presented to the full Confer-
ence at the closing session by three State Parent Del-
egate representatives. It concludes with the remarks of
the Responder Panel, directors of government pro-
grams that provide services, who responded to the
issues presented by the parents.

  During the Conference, President Bush and key
members of his Administration expressed their personal
commitment to Surgeon General Novello's initiative and
emphasized its importance to our Nation's future by their
attendance at the Conference and their remarks to the
participants. The speeches delivered at the Conference
by President Bush, Secretary of Health and Human Ser-
vices Louis Sullivan, Secretary of Agriculture Edward
Madigan, Secretary of Education Lamar Alexander, and
Assistant to the President for Economic and Policy Devel-
opment Roger Porter are found in Chapter 5.

  Concurrent with the Parent Work Groups, panel
presentations that explored current services, both pub-
lic and private, and parent support groups were con-
ducted for General Participants (those who were not
State Parent Delegates). These presentations, bypanel-
ists who were experts in their respective fields, focused
on ways to customize services to fit families instead of
trying to fit the families into the services. Chapter 6
contains summaries of the Panel Presentations.

  All participants had a choice of 28 informative
workshops covering a variety of topics from nutrition,
health care, and injury prevention to violence and its
impact on children. These workshops, led by profession-
als in the fields, are described in Appendix F. Addition-
ally, the Conference presented a special exhibition of
Federal, State, and local programs dedicated to the health
and education of children. Program representatives
shared information about the programs and distributed
materials. Appendix G contains a listing of the exhibitors.
Participants were entertained during each of the breaks
by an array of performers, most of whom were children.
Appendix H recognizes each group who shared their
talents with the participants.

Report of the Surgeon General's Conference  17


2


Chapter 2

Antonia C. Novello, M.D., M.P.H.

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                   0 titist <I tlt,.itll\ l(.\i\Ctl 01
tiie;t~les atitl otht~t.c-litltIlic~otl illtt(bt~~. \\`c, II.I\(. ~g011t~tt
       

iti\x~l\etl iii ttiil~i~o\t~~l tittti~itioti ~~i~~gt~itlt~, \\~t~u,~irt \t)t1
to ktltnv tltal \\t' ;tt.v licix* IO \\ot.l\ \\itli \ott.
  1.t.t lll(' ~~pltld jllS1 ;I tttolllt'tlt 0,l tllt~.t\lt~\. \\`t,
II:t\e ltad ;t \.t'n sttccc\rfitl Fc~tlt~t.;tl St;ttt~ pti\ ;ttt' t'.itit-
Ixtigii to iticwxse itiiti~tttii/;ttioti~. (it ;riitc~tl rlr;it ttic~;id~~s
of'trn app~xs ii> b;t\es aid that \\t` Itat. l)t.t.tt iti ;I Iutl
lv;t\`e, bitt Irt tiic poitit ottt tli;tt Ilit' 1 ;ttt' of il1t.;tblt,\ Iia\
tll-tq~Ixd 6.5 ptTc"lt I,m\.c.t~tt  l!Ehl ;ttttl l!NI. 1l~0111

L'T,iXticaaes iii IWO to 94x3 t';t\r\ iii l!Ml. \\`t, ll;i(l otll\

ahottt 1 ..WO c;tscs of'tit~;t~lt~s iii 1 IN:. \o \ ott t ati 4t.t' \\ t'
still li;t\~ f.kit- to go to t-cdttcx~ ~iitwlc~~ cotiipl~~tt~h. l'lit~
public and thr pi-i\xtt. \t'cton ti;t\ t' tiictl~ili/t~tl: c'\t't.\otic'
11~s txyx)tldtd. Lh. Sttllhtt. Dr. Kopt.1.. lh. \l,tvltt. atltl
I ;tt`tA finisliitig ;t sir-tit\ tottr ;tti(l li;i\v \i\itt*d clitiic 4 iii
San Dirge. lkttx)it. 1'liil~ttlt~ll~lii.t. Kal)itl (:itl_ I'lioc~tii\.
xntl Lhll;tb to c'ticotti~;tg:(` iittttttttii/;ttioi~.
  This lxt\t Ft-itlax. \\t' \-i\itt,tl ,111 it1tt11tttli/;ttiotI c litlit
iii San Ikgo \vitlt l't~t~~itlt~ttt Ihid*. lloll~~~~~otl t t~lt~l)t itic,\
tool\011 iii~~islrs ititi~~ttt1i/.tti~~tt .I\ tltc,it c .ttt\t'atttl 101 i1tt.(l

tliv (:ltildwii'~ .~c.tioti Srt\\ok. Tli~, I'ttldic l It~.tltl1 \(,I-
\-kc h;ts txyx~iidtd aditiii ;thl\. l)tlt tlic.1 t' ir still itic )I (` tc) lx.
(lotic. I.vt iii~`tit.t1\t' tliis l)oiiit. \\ll(.tt \\I' jolt1 tog:(~tli(.t -
lxtt.t'ttt\. ~oit1ttiti~1itit~~. .ttitl 111,. qo\c't t1t1l~`tIl-\\lI~~t1 10.
gvtltt~r \\t' tliitih ;tti(i c.kit'. \\c' t.tti ItI1 ii cltt\ c,l)irfl,ttric
`ll,l1111d. \\L. ll.l\~~ 1,,l111 IIIC. 111~`.,11\ `Ill(l IllC. \\ Ill.

"The influence of a parent is impos-
sible to exaggerate. A child looks up
to a parent; children trust their par-
ents to help them make their dreams
hecome realities."

  \IOI t' tlt.ttl L'.00(1 \tw\ ;I~o. l'hto said. "Thr dirrc-
tioti iii \\Iiic Ii t,tli~t ;ttio1i st;tt'ts ;t tit;tti b.ill cl~tt.miitie his

ftttt~i v lift*." I lx~lic~\c~ tli;tl. 11\iio\\ it to Ix, tt-tic in tiivmvti

lift,. \I\ trrc~tl1c.t~ lids l)t.t.ti att cdttcatcw all lie*- lif'k. and
ditb Ix,lic*\t3 ttt;tt ctlttc-.ttioti i\ tlit, gw;tte3t gift 0f`;tll. She
\\;I\ tlit. ottt' \\I10 t~ttt~t~tti;t~:t.d *tit' to ttw tducatioti as ;I
1001 for \I,( ct.\\,. ,111 of it4 l~;irii tlir ditiietisit~tic of 2
l;tl~~t`l~ \\Ol~l(l f;~t)ttl 0111` l,at'cllt%  Tlic inflttetice of ;t
lxtt t'ttt i\ itttl~o4~il~lr' to ~u:,rj:eixtr. .-\ child lool\s tip to
;t pat t'tit: t~ltiltlt-t.11 tt~tt~t lIttAr Ixit~~tits to help tlietii make
tltt~ir tlttwii~ Ixa~tii~ t-tditir's.

  It \\,I\ ;I Ioltgny fi)l- t11c f'rotn F;~jartlo, Puerto Rico.
to tlit, Offic~t~ of (lit. Sttt~g~t~ti C;ctivi-al. bitt it \v;ts not ati
it1il~o~rit~lt'\\;iI. Etlttcxtioti tiixle it poh5ihle. I\\uttldask
\ott to t t'tiit~titlx~t~. too. that txq~tioiial tactic*. ~vlio
tottchtd atltl itt\pit.cd Iott .tz ;I student. ThinI, uk;tt a
tt~.tc~lt~t~ c;ltt (IO.  .\\ p;tt~t'ttt\. cYltlc~ttol~~. and tl~;lltll
l)t of~~~~iottal~. 1,~' t111tzt t~~~ii1t~tiil)t~t~ tlir iitfluetic~ 1l.t` can
It,*\-v oti tltta fittttt~t. t~l'ottt~ cliil~lt~t'ti.

   \\.ht,ii I'ixGtlvtil htcti otttliiictl his cis Satiotwl

Fdti~~ttion (;o;tI~ tot. Itic, vc';ii. L'OOO. Iir ~tni~iont-tl an
\ittc*i-ic .t \\-lt~~t-c~ otti. c.ltil<lt.t*it c-oiiipc`tc 011 ;tti ititrnl;t-
tiott.tl 1t~t.I. IIt, f.tit,\\ tli.tt Ilit> cl1il~livtt ol'totla\~;ii-v tlit
v\I)lo~~`t \.\\I i1c.t ,. tc'.1( lt~.i\. :ttid iti~t.titot-~t~f'totiiot-t-o\\.
\\ C' ii:ti\1 t~`.t( It tli<.tii ,111 llidt ur k~io\\ atid lmnide tlitmi
\\ itI1 IIIII*C' tool4 111~7 i~c,c,tl to tii:rl\t~ tlic~ii- tli-taatttc cotlit'


true. Our children are very smart; some of them are
smarter than any of us ever were. They are eager to
learn, and we must not fail them.

   M'e have some hard facts to face. Our educational
system is unsurpassed at helping children excel at all
levels, from diverse backgrounds, and often with En-
glish as a second language. Our public schools and our
concept of an educated society are the source of
America's strength and its potential. Still, we must face
the truth. Scholastic Aptitude Tests (SAT) scores con-
tinue to remain low. M'e are not doing well in math and
science. Many of our schools are overcrowded and
overburdened, and many of our teachers are set up to
fail by having too many children to teach.

"We can't become discouraged. Our
teachers, children, and future depend
on our dedication to turn things
around. Some will tell us that it can't
be done or that it just might be be-
yond hope. But I know in my heart
that isn't true."

  We can't become discouraged. Our teachers,
children, and future depend on our dedication to turn
things around. Some will tell us that it can't be done or
that itjust might be beyond hope. But I know in mv
heart that isn't true. The President and the Kation's
Governors are working to remedy these problems-to
make our schools the institutions for learning that they
were meant to be and are capable of being. Collectivel)
we must work to make that a reali&.

  `1s Surgeon General, I am responsible for the
health of the people of this great country. That means
all cultures, races, mothers, and fathers. And to me, as
a pediatrician, it especially means children. When I
was appointed Surgeon General, I resolved that my
agenda would focus on the needs of our Nation's
children. It is an overwhelming task, but it is an
altogether necessary one.

   When the President announced his six National
Education Goals, there was, and continues to be, great
enthusiasm for the promise of these goals. The first
National Education Goal, that "By the year 2000, all
children in America will start school ready to learn,"
holds special importance to me. This goal is realistic,
and it is achievable. I believe those of us here in this
room can be instrumental in implementing it in our
own schools and communities. I know it is worth our

best efforts.

  As part of this first National Education Goal, we
must work to satisfy three o$jectil,es:

* First, that all disadGmtaged and disabled children
lvill have access to highqualivand developmentally
appropriate preschool programs that help children
prepare for school.

+ Second, that every parent in thiscountywill be their
child's first teacher and devote time each day help
irlg hi3 or her preschool child learn; that parentswill
have access to the training and support they need.

+ And last. that children will receive the nutrition

and health care needed to arrive at school with
healthy minclsand bodies, and the number oflow-
hir-thlveight babies will be significantly reduced
through enhanced prenatal health systems.

  These three objectives are the keys to our children
arriving at school healthy and ready to learn, and vour
participation is crucial.

  This Conference has been structured to give each
one of you the opportunity to participate and to listen
to what the esteemed panelists, Government represen-
tatives, and keynote speakers have to say. Most impor-
tantly, this Conference has been structured to give you

22 Parents Speak Out for .-\merira's Children


the opportunity to participate in these discussions and
in the dialog that follows.

  Those ofyou here representing the .?O States and
the Territories will be able to tell the rest of us what
works andwhat doesn't work in your States and commu-
nities. There is alwqs room for improvement, growth,
and change. We are going to talk about the good and
the bad. By doing so, lve Frill be able to avoid mistakes
along the way and help, in turn, to highlight and
applaud the success stories and use them as models as
we move toward the vear 2000.

  Toda!,, there are 64 million children in this coun-
tly. M'e have 19 million .&nerican children under .?
years old and 4 million under 1 rrar. \IoI-e than 20,000
children a F'ear are killed bl. injuries. Some 1,6'ii have
died from AIDS since its outbreak. Childhood diseases,
due to a lack of vaccines, ha\,e disabled or killed thou-
sands more. Although I am very hopeful, \ve must be
honest. The statistics are staggering.

  What can we, as a Sation, do? M'hat can I, as
Surgeon General, do? For one thing. I am always going
to keep you informed. and I am going to tell you what
you can do to help the Department [of Health and
Human Services] and the Nation. To start, the goal of
the Department of Health and Human Senices is to
have 95 percent of children immunized by 1995 and,
hopefully, all of our children immunized by the year
2000. If you are a parent, see that your children are
immunized, and tell other parents, too. If you are an
official, check out the situation in your own area and
help make immunization for all children a reality. I
believe that immunization is a right, and we must all get
invol\-ed to make that right a reality. To be successful, all
vaccines must be used if they are going to work; they do
us no good by sitting in a clinic or a doctor's office
somewhere. I must make one point perfectly clear: We
do not suffer from lackofvaccine; we suffer from failure
to immunize. The immunizations are available; we
need to get them to all of our children.

  With regard to the terrible pandemic ofAIDS. it is
here that we must increase our vigilance to stop its
spread. We must educate about AIDS, help everyone
involved in the care of those with HI\`disease, and send

"It is my sincere hope . . . that: our
true legacy will be evident in the
children who will benefit from our
collective efforts."

the message that we must fight the disease, not the
people with the disease. The number of pediatric AIDS
cases continues to increase. Before 1985,58 percent of
the children reported with AIDS were from New York
City: Newark, or Miami. After 1985, however, only 36
percent of children with AIDS were from these cities.
AIDS in women and children is spreading beyond the
large cities to smaller towns and even rural settings. The
greatest increases in numbers of cases reported to the
CDC [Centers for Disease Control] were in rural areas
and in metropolitan areas with populations of under
100,000. From 1988 to 1989, there was a 12 percent
increase in the number of pediatric AIDS cases. From
1989 to 1990, there was a 37 percent increase. As of
August 1991, 3,199 children under 13 with AIDS were
reported to the CDC, more than half of them in the last
2 years alone. Of these cases, 84 percent were infected
perinatally, and 52.4percent, or 1,677, have died. Based
on the National Sur\ey of Childbearing Women, the
CDC estimates that 5,000 to 6,000 HIV-infected women
gave birth in the past year. Based on a 30 percent
transmission rate, itis estimated that 1,800 to 2,000 HIV-
infected infants were born.

  Children of minorit)- families have had mom
than their share ofXIDS. For esampl~`. dth()t~~:h OIlI!'
1.3 percrnr of all cliiltlrcll ill lllv L`1litc.d Sl:ll(`~ ;I].('


  The third point on \\-hich UY all nrtlst continue to
fi)cur is thnt of'chilc~lioc~c~ injuries. .kcol-ding to ;I rt'cc'11t
health report issued 1,) the Biir~;iii 01' Slatcmiai and
(:hild Health. injuries aw the nlo\t +lific:unt hcxlth
prohlein affecting our S`atioil's cllildi-(`ii mtl ;idoIcs-
cents. lio\vt3~r \ve iiiwsiirc it-\vhctlici- lx ~iumlx~s of`
deaths. dollal- coC5 for tre;itnimit, or rel;iti\c r;iiikiiig\
with othu health pix~hleiiis. 1iijtii-r. ncul not inaiiil ailtl
                        
kill 50 I~~;III\. of ow rhilclt-tw. Thv tick of illjwics is ;III
epicternic~v~ cm control. (hilclhoorl injiii~~isoiic~oi~tlic~
                              
principal public htdtli prot~lriiis iii .-\iiiri-ica today.
causing inow deaths thaii all chiltlhootl diw;i\v\ coiii-
biiiecl aiicl coiiti-ibiitiil g :4:-l-ratk to chiltlhootl clis;il,ilin.
  The Cllitetl Statrh i\ also ;I Satiotl pl~~gl~~tl tn

\ioleiice. .Ainei-ican childi-en arc 10 tiiiic.5 mot-v liklx

than Gmn~111 chikhell. 1 I ti1nes 11101~ likelv than FI-cI~cI~
chilcll-vii. and I.3 tinic5 iiiofc lil\cblv thm English chil-
dren to Iw victims of` honiiciclc.  \\-c COllld dcbatc
whethrl- it is pmertl- or race that w inttwsifies patterns
of~~~ot-t~idit~ alit1 mortalit\.. tliat 50 tlarkcns the picture
fol- Colrncc. but 110w. 411ffic<. it to 4;q 1haL this 1121s to
stop. .A5 Ah-ahm Lincoln 5aitl in 1X60, "lxt [I$ I1a.r
faith that right tnaks might." linob~itig Eve are right.
let's tlarr to do OIII- tltit! as jvr itndri-statid it.

24 1';11(~111\ st""`k 0111 for .\111rl~i(~`l" (:IliltlrcIl

thaii ati\ SUI~Y)I~ (kmri-aI in liiston~. 11~ ~ctieclule-
                            
ad tin 4tdf if'\011 don't beliew ilir-goc~s off the rails
1vllc11 I \ isit ;I lwdiarl-ic clinic. an Indian Health Sri-\-ice
Iiospital. ;I pdiatric AIDS unit. I have ulked in more
high ~ctiool~~~i~cl iii nioremiall tmviis thaii I can i`enit'nl-
bet-. The Black Foot Indian Nation gave me the mme
"Pi-incus Fhiiig \2'oinan."  I believe the\- hnw that I
nwitetl to touch ~~II.~irieric~iiis. For the time that is iriilie
to 4uve 3s Surgeon Ge~iei-al, I am absolutelv coinnnitted
to inahc a clifklx2nce. I am making these conf~ssioiis to
\V;II-II 1011. I did 1101 accept the I-esponsibilitv fi,~. this
Iddtly (~hiltlrm Kradv to I~earn Initiative for re;~s011s
of st;ttttj. 1 a111 a wriowi its VOII are.

  I see our tarli 2s itnproviiig thv health and b~lf:,\re
of. our Satioil'.9 cliildrcti in e\x37' hw we can.
                                 B!
;rttc'litliiig ttii4 (i)iit~~t~~~~i(~~. \`()I1 ha\7 niadc 2111 escellrnt
colllnlitn~c'tlt OII l~~~!~~~ll~ol~ other parents and children


from your State, and for that I commend you. I urge !`ou
to participate fully in the panel sessions and discussion
groups. M'e are here to teach and to learn from one
another. 1Ve are going to, as the kids sag. "get real."

  I know that any ofvou here ~vould jump f&m vour
seat and take offin a dead run to grab a child from the
path of a car. You ~vould shield a child about to be hurt.
You would endanger yourself' to protect a child from a
dangerous fall, L27ien it comes to health and education,
we need a dead run; we need total intuitive cwnictioll
to remove even- barrier and to reach even child. This
Conference is geared to be that "dead run."

  When I \vas appointed I vo~erl to speak fiw all of
the children. I vowed to be the Surgeon C&era1 fi)r all
Americans. especially for all .%niericaii children, ivhrthei
rich or poor, IV`]-icall-,~tneric~lll, lchite. Hispanic. Xsian
Pacific Islander. or Satire ,~tnet-ican-~\.het~i~r docu-
mented or not, from the President's grandchild to the
child of a Migrant Marker. A%ll our childt-en need this
attention. hut there are some ~vho especially need ml
voice. One in five American children lives in po\.ertv: I
speak for them. ThirF-eight percent of Hispanic chil-
dren live below the poverty line; 43 percent of all
L%frican-American children live in pavert!`. I speak for
them, too.

In the lvords of the Chilean poet, Gahriela Mistral:

Mnn~ ofthe things WC need con zoclit;
The rhikd cannot.

Right mm is thP timr his bows m-e b~ingfkumcd, his
blood is being made,

and his smses are being developed.
To him UP rnnnot answr `Tornon-ow I
His name is `Todny. '

  Today, as parents, you are hoth the expert and
the student, and I ask all experts today to think also as
parents. By all means, play both roles. By the year 2000.
chances are that any one of' us may he onl!, a distant
memory. It is mv sincere hope, however, that our true
legacy will be evident in the children who will benefit
from our collective effbrts. They will he children who
started school healthy and reads to learn, children c\,ho
learned and learned w;ell, children lvhose parents taltght

them first and set the stage for the teachers who
followed.childrenwho\\ere immunizedandwellnour-
ished, children \vho have had all that America can give.

   The time has come for me to turn the focus hack
on vou and ask all of you within this room to work
together. M'e have a precious opportunity to spend 3
days at this Conference to think, argue, forge new
initiatives, prioritize, and get involved. It is my fen.ent
hope that the goals of this Conference will become a
blueprint for honding education and health-an essen-
tial task, if our children are to succeed.

   I wish \`ou the best in your endeavor. God bless

I~OlI all.


3

Parents Speak Out:
Summary of Parent
Work Groups


Chapter 3

SUMMARY OF PARENT WORK GROUPS

D uring the Conference, the State Parent Delegates attended workgroups
    to which they were assigned according to the geographical regions in
    which they live. Native American and Migrant parents could choose to

attend the regional work groups or separate work groups, which were established
to ensure that their special needs or issues were not lost. In all the work groups,
roundtable discussions were held to discuss three topics representing stages of
families' imolvement with health, education, and social senice systems: aware-
ness of and entry into the systems, participation in the systems, and transitions
from one program to another as families move through the systems. In their
discussions, the parents examined three main questions related to these stages:
(1) N'hat is my role as a parent in this stage of working through and with the
systems? (`L) Mhat are the barriers or other issues I face in this stage? (3) What
are some solutions to these problems, and what are some existing model
programs that incorporate some of these recommended solutions?

  This section details the issues raised by the parents. First, a summary of the
national consensus, broken do\vn by topic, is given. The national consensus
summa? contains issues raised by several of the lvork groups and upon which they
were in agreement. Sext are summaries ofthe comments made by each workgroup
(regional, Native American. and Nigrant). To avoid repetition, these descriptions
may not include issues contained in the national consensus. Their purpose is to
highlight the issues thatwere of particular concern to the specific workgroup rather
than to provide an exhaustive list of issues discussed in each work group.

28 Parents Speak Out for America's Children



National Consensus

Awareness of and Entry into Health, Education, and Social Service
Sys terns

Roles and Responsibilities of Parents            Solutions

* Identify their children's needs
* Interact and communicate with their children on
  a daily basis
or Consider themselves equal partners with profes-
  sionals who also care for their children
or Participate in networks and support groups

Barriers and Issues of Concern

Ir




t

*

*




*




*

sr




*

*

Ir

Confusion about the systems due to limited avail-
able information or contradictor information
Too much "red tape"
Cultural insensitivi? and communication barriers
Poor attitudes and intimidating behavior of ser-
vice providers

*

*

t

Poor pa) and lack of incentives for providers to
accept Medicaid

*

Inflexible hours of programs, clinics, etc.
Transportation problems/inconvenient locations
of senice facilities
Inflexible criteria for eligibili? to receive senices
Lack of accountabili& within the svstems
Inadequate funding of needed senices

Universal application form to apply for an array of
serl-ices, such as M'IC, Head Start, Food Stamps, etc.
One-stop shopping, with assigned resource coor-
dinator for each family and provision of service
directories, including toll-free hotlines
Flexibility in criteria to establish eligibility to re-
ceiye senices

Convenient operating hours for programs and
Facilities

Elemental? school curricula in social compe-
tent)- and parenting skills
Funding for support groups for families
Mechanisms within the systems for establishing
accountability and for halting complaints
Rotation of senice-provider staff to prevent em-
plo~ee hut-nout

An al\.areness campaign to promote the impor-
tance of healthy children
Development of a national health care policy

Participation in Health, Education, and Social Service Systems

Roles and Responsibilities of Parents

t Become empowered and become role modelsfor
their children and other parents
* Serve as advocates for their children, for other
parents in the systems. and for the programs that
provide senices to them

It Train ser\iceproviders in their culture and unique
family characteristics
* Be involved in program decisionmaking and in
evaluating services

* Be invohred in program activities and work with
sel-\ice providers in meeting their children's needs

30 Parents Speak Out fol- .\lnerica's <:hildren


Barriers and Issues of Concern

t Bureaucraw. inflexible hours, and transporta-

tion-problems
* Gaps in senices

* L.ack of coordination among sei3ices
t Lack of a farnil!,-centered philosoph!
* Insensitivity not only of sell-ice providers but of

the public at large

* Lack of incentives for families to become indr-

pendent

* Rigid eligibility requirement\
* Inequities in funding for education
* Frustration with the systems
* Hesitation in confronting the systems
* Need for support groups

Solutions

* Training in parenting skills, beginning as early as
elementarv school

* Improved communications among service agen-
cies and central community resource clearing-
houses (one-stop shopping)
or Paid positions for parents on boards that oversee
programs

* Emplovment policies that support families, such
as farnil!, leave

* Secure and increased funding for programs
t Media campaign to improve public opinion of
families receiving services
t Election of go\-ernment officials who support
families

* Expansion or adaptation of mode1 programs to
reach more communities and faivilies

Transitions Through Health, Education, and Social Service Systems

Roles and Responsibilities of Parents
or Be active participants in the transition process
t Be good recordkeepers

  it Demand respectand develop self-esteem for them-
   selves and their children

Barriers Families Face During Transitions

* Lack of communication among programs and the
need for one-stop shopping
+ Failure to receive copies of children's records;
records that contain technicaljargon or that are
not translated into parent's native language
* Lack of sensitivit)

* Lackofconsistencvin parental involwmetit across

programs

* Need for support groups
* Too much paperwork
or Transportation problems
or Inflexible programs and facilities

* Lack ofempIo\ment policies that support L'Aiiilir~
t Xholishment of programs IKYXIIW of u~~st,tblc

funding

* Be a good role model for their children and for
other parents

t Define the role of parents for professionals in the
  s\stems

Solutions

or Toll-free hotlines and resource directories
t SensitiCv training for service-provider staff
* Mentoring of new parents in the programs b)
  svstem veterans

+ Guidance for parents provided by doctors. hospi-
tals, and other service providers
* One-stop shopping and assignment of one case-
worker per family for all programs

t Reform of eligibility requirements to consider net
pa!-. examine hardship conditions, and provide a
saf'en, net

* Legislative action, such as farnil!, leave policies
* Asscartit.cbncw training for children by tliril-parellr


Awareness of and Entry into Health,
Education, and Social &mice Systems

The parents willingly accept their responsibility as the
primanpro\ideroftheirchildren'sneeds. However, the!
also acknowledged that every family needs help occasion-
ally. Federal, State, and local programs can support
informed parents who enroll their children into these
progmms. Unfortunately, lack of information, bureau-
cracy, and inflexibili? in service provision prevent man\
families from benefitting from these programs. The
parents maintained that programs must be coordinated
under the one-stop-shopping approach to supply flexible
and accountable service.

Roles and Responsibilities of Parents

The delegates recognized that they must first identif!
their children's needs. Children need to be immu-
nized, given a proper diet, nurtured, taught self-respect
and respect of others, taught learning skills, provided

with a safe, stable home environment-the list is long,
covering the full range of physical, emotional, and
spiritual development. No system ofhealth, education.
and social senice professionals can take the place of
parents in the home. Parents must take the time and
effort to know their children. Federal, State, and local
programs can sen'e only a supporting role as parents
struggle to raise healthy children.

  Daily interaction and communication with children
is key. Good parents listen to their children, not onlywhen
they complain or are sick but also at other times. Parents
with special needs children must make an additional
effort to maintain balance within the family and to devote
attention to healthy siblings. All children, however. can
benefit from existing Federal, State, and local programs,
and parents must take the second step offinding out what
the programs are and what they have to offer toward
meeting their children's needs. There is no substitute for
the well-informed parent.

  The delegates maintained that parents should
consider themselves partners on equal footing with

professionals and other care providers and be recog-
nized as such. Parents who know their children's

health needs and risks and the services available to
support them make self-confident parents who can
work effectively with care providers. U'hile respecting
the judgments of professionals, parents should not
surrender the decisionmaking to them; when profes-
sionals give advice that seems questionable, parents
should trust their own instincts enough to seek second
opinions.  As advocates for their children, parents
should be assertive and persistent but should not
forget to be diplomatic. The way they interact with
care providers will influence how their own children
behave toward others. Good partnerships are respect-
ful partnerships.

                         -5
                          .-. ----- ,: .----:;. ._
     :                     _-..-- .._
                                       /
                                     -z-.~
No system of health, educa+& -and
social servic'c. profession&& can take
the place of parents in the home.
                              `L :
                               

  Finally, the delegates agreed that networks and
support groups are a tremendous asset. Parent networks
can proride information, moral support, and hands-on
care, and can make up for some-though certainly not
all--of the failures of the present health care systems.
Setworks can help parents at all stages of their children's
health care, but most ofall in the entry stage, as the); make
their first tentative and sometimes confused steps into the
programs. N%en an individual family questions a profes-
sional opinion, networks can supply alternative sources of
information; when the family doesn't know where to turn

32 Parents Speak Out for Xmerica's Children


or what step to take next, networks can point the way.
Networks allow parents to draw from the shared experi-
ences ofother parents and work together toward common
goals. Not all parents entering the programs know their
rights, and networks give them the opportunit\ to learn
and exercise their rights in an unthreatening em-iron-
ment. Networks are effective in this wa\- because theI.
teach h>r example.

  Networks can also help parents learn their respon-
sibilities. Not all parents are responsible parents. M1ile
it is important that parents raise their children as thel
see fit, some fail to recognize that their children have
special needs. The children may be physically healthI,
but have learning disabilitiesor behavioral or emotional
disorders, and their needs ma!. pass unnoticed. The
parents may have alcohol and other drug problems or
problems that lead to child neglect or abuse. These
parents may den!, that problems exist. The!, may be
reluctant to seek help because they believe it is shameful
to do so. Professional health care providers can inter-
vene in such cases. However, professionals are often
perceived as threatening and, as a rule, are less effecti1.e
than parent networks in these especiallv difficult cases.
Troubled parents are more likely to listen to other
parents and to perceive them as partners rather than as
authority figures. The other parents can, in turn, seek
guidance from the rest of the network as it shepherds
the family into the health care systems.

Barriers and Issues of Concern

The most often cited problem of parents being aware of
and entering programs was confusion about the systems.
To many parents, the systems seem designed to discour-
age them from the start: To withhold information and
frighten them away with paperwork. So single source of
information on the man\- available resources exists. and
information provided is often contradicton. III addition.
many employees of the programs don't even know how
the svstems work, nor do they how how to access the
information that can help parents find their ~a~~.

  The amount of red tape is enormous: application
forms are long and complicated. To make matte\

worse, different agencies have different application
forms, and parents are forced to repeat the same com-
plicated procedures as they try to move from one agency
to another. As one parent stated, "The paperwork
doesn't flow."

  In addition, application forms make no allowances
for the diversi? of applicants. Parents who are not native
English speakers often have great difficulty trying to make
sense of the forms. Even fully fluent English speakers
make this same complaint. No allowances are made for
cultural differences or for the communication styles of
minorities. Alternative sel\ices for the blind and the
hearing impaired are also lacking.

  Many delegates complained that the attitudes and
behavior of social senice workers and health care pro-
viderscan be patronizing, unfriendly, intimidating, and
sometimes even abusive. They believed that a great
many social sell-ice lvorkers suffer from employee burn-
out. 1Vorkers are not sensitized or properly trained, and
they therefore bring their prejudices to the workplace.
Parents entering the programs feel this most strongly,
while those at later stages come to expect a certain
degree of mistreatment as part of the price they must
pay in eschange for senices. "It's hard to get into the
system, and once you get in, you don't want to stay,"
stated one delegate. But their needs force the parents
to stay, with the result that they come to feel as trapped
by the systems as by the needs that brought them to seek
help in the first place.

  As for health care providers, their attitudes and
behavior tend to reflect their own unhappiness about
how poorly they are paid for the services they provide.
Medicaid, for example, pays providers so little that the)-
have no incentive to take Medicaid patients. As a result,
the patients often receive inferior care or are refused
care outright. Cltimately, the patients are the ones who
suffer from inadequately funded programs that fail to
deliver on their promises. The health care centers
themselves often present a\arietvof physical barriers to
disabled children.


who hold S-to-.5 office hours are making no allo~vances
for working parents. The lvorking parent \\llo has to
leave work-losing a morning. an afternoon, some'-
times a whole da!, in the process-to mert these inflex-
ible hours may be at risk of losing his or her job. This
situation. in turn, ma!' put the child at risk of forgoing
important preventive medical services such as immuni-
zations and lvell-child checkups.

  Transportation is a related problem. Parents
often have to take long hours a\vay from their ,johs
because they have to travel long distances to their
appomtments, and they often have to rely on either
public transportation or help from friends. This prob-
lem is particularly acute in remote, rural areas.

  The delegates expressed unanimous dissatisfaction
with eligibility criteria.  The criteria are artificial and

inflexible. The\ do not reflect real income-net income,
after taxes-and applicants can be denied entry into
programs if their income exceeds the criteria by as little
as a few dollars. A family mav meet the criteria one !`ear,
onl!, to be disqualified the next because of a slight rise in

income. M77ile the eligibili? criteria are meant to prel'ent
abuses. the criteria themselves often foster dependency.
In man\. cases, a famih, can benefit in the short run-
quali@ for Food Stamps, for example-if one of the
parents quits a job so as not to exceed the eligibilit)
criteria. Quitting a job can actuallv mean more food on
the table. L'nder some welfare programs, a family can
quali@ onI!. if the father leaves home. `You learn to pla!
the :game." one parent said. Parents take these steps, not
because they are laz!. or cynical hut because they have
immediate needs and feel they have no other choice.
Ho~ve\,er, the choices they make often mean that depen-
dence on welfare programs is handed down from genera-
tion to generation.

  Parents who try to make this point with social
selyice Ivorkers feel even more frustrated. Thev face a
bureaucracy from the moment they enter a program,
and the)- either adapt to the bureaucracy or go without
selTices. If they feel they are mistreated, thev have no
one to turn to within the systems. They see a general
lack of accountability and are often afraid that if the!,


protest, they will be denied services or subjected to
further mistreatment.

  Inadequate funds are an underlying problem for
all programs. Because there are simply not enough
dollars to go around. programs sening the same com-
munities are forced to compete for the same dollars.
This competition createsdivisionswithin communities.
and the rifts are often felt in the parents' netjvorks.
Parents will natwall!, fight for the children, but lvhen
they are forced to fight other parents, the real losers are
the children.

Solutions to Promote Awareness of and Entry
into Systems

First among the proposed solutions leas a universal or
near-universal application form for all services. \vith
consistent eligibility criteria. The form shoulcl be eas\'
to read. .\lternate versions of the same form should he
made available to parents who are not native English
speakers. Special arraiigementssholltd be made fi,r the
blind, the hearing impaired, and applicants Ivith low
literacy levels.

  There should be a single point of entl?' for all
senices, i.e., one-stop shopping. Mhen families enter
the bureaucratic maze, the\ should be able to consult a
single source for comprehensi1.e information on avail-
able services and referrals. A resource coordinator
should be assigned to each family, and the family
should be provided with local, State, and national
directories of available semices. Toll-free hotlines for
resource information would be a useful supplement.

  Eligibility criteria need to be more flexible. The
criteria should be based on real (net) income. Inflexible
criteria often foster dependence on the systems, as par-
ents quit jobs or avoid seeking emplo\ment and fathers
leave households so that families can meet rligibili~
criteria. Greater flexibility will promote self-help.
  Agencies must also have flexible working hours-
not just 9 to 5-in support of working parents.  M:I~I~
parents risk losing thrirjobs if they have to take time off'
from work to meet appointments with cart providers.
  Programsshorll[Ihe instittltedin element;~lv~choc,l~
to develop social cc~mpeteilc\~ancI part'llting skill< and 10

help train children to be effective parents and advocates
for their own children someday. The characteristics
taught should include self-esteem, problem-solving and
decisionmaking skills, and respect for others.

  Funds should be made available to help create
and maintain support groups. Support groups are
popular: they encourage parents to take a more active
role in raising their children; they develop parenting
skills; and, because the). promote self-help, they can
actually lighten the burden of social service systems. As
one parent stated, "The best program is the program
that doesn't cost anything," in other words, that encour-
ages independence. Support groups are the closest
kno\vn approximation to that ideal program. They can
be developed at the neighborhood level, at the work-
place, at schools, or within the tribe, and they can be
tailored to any number of specific needs.

  Parrnts need a wa)- to talk back to the systems.
Parents are partnerswith sewice providers, and the true
beneficiaries are the children; when the partnership
breaks down, the children pay the price. Parents should
be treated compassionately and with respect. A mecha-
nism should exist by which parents can submit evalua-
tions ofthe services they receive and register complaints
when necessar). Complaints should be addressed in a
timely manner. The bureaucracy must be more ac-
countable. and accountability must be on site to be
effective. Parentswho have been recipientsofprograms
should sel?e on agency advisory boards.

  Man!, delegates expressed the belief that em-
ployee burnout is responsible for much of the rude
treatment parents receive. The delegates suggested
that rotating employees to different posts within agen-
cies could help prevent burnout and would certainly
result in better informed employees who can then pass
their knowledge on to needy families.

  An all-out effort needs to be made to raise public
awareness as to the importance of healthy children.
Antismoking and AIDS a\vareness campaigns have
proven rffectiw: children should be the next focus.
  Togerhel. j\ith a media campaign on children as
;m irl\rstnlellt in the ftltlu-r. thi\ count17~ shwAtl initiate
;I,, (`11(`1 gt.tic, dtJt,;t1v OII o,~I- 1iatiollal lir;llrh cart polic.\..


Is health care a right or a privilrgr? Is health illsurmce
a right or a privilege? We cannot expect to move
forward on particular solutions without defining our
values and goals in specific, practical terms.

Participation in Health, Education,
and Social Service Systems

As families participate in health, education, and social
service systems, parents must seek education for them-
selvesand become empowered, the delegates maintained,
so that they can become role models for their children
and for other parents whose families need senices. Fur-
thermore, programs should offer incentives for parents to
become empowered and for their families to become
independent. Programs need to become family centered,
and parents need to be involved in program
decisionmaking to keep programs focused on providing
quality service to meet families' needs.

Roles and Responsibilities of Parents

The delegates agreed unanimously that the parents'

primary role ofnurturing their children does not change
as their families participate in health, education. and
social service systems. Parents of children who receive
services do not relinquish their role as the prima?
advocates for their children and as the parties respon-
sible for ensuring that their children's needs are met.
On the contrary, the delegates expressed that participa-
tion in programs brings added responsibilities to the
parents. The delegates contended that parents in
families receiving senices have an even greater respon-
sibility to become empowered themselves so that the1
can empower their families. They stressed that parents
must seek education, when necessary, and good mental
health; they stated emphatically that parents have the
responsibility to be "emotionally and socially straight."
As parents become empowered, they become role mod-
els, not only for their children but for other parents in
the community.

36 Parents Speak Out for America's Children

  An important function of parents whose children
receive senices in serving as role models is to reach out
to other families and enlist them into the programs.
Mhen new families are enlisted, declared the delegates,
these parents have a responsibility to help orient the
new families in the programs by providing them with
information and offering their support. In this way,
parents sene a dual advocacy role-for new parents, by
offering their support, and for the programs, by publi-
cizing their senices and being committed to them. This
commitment may involve lobbying for endangered pro-
grams. As parents sene as advocates and network with
other parents, they can build community support for
families. As one delegate stated, "Empowerment of
families happens as a result of education, support, and
working together."

  LVorking together, the parents insisted, also means
jvorking lvith the senice providers. Parents can sup-
port the efforts of professionals working with their
children by being involved with the programs' activi-
ties and offering supplemental exercises at home.
Parents should ask teachers or other care givers for
actillties that the!, can use at home. LVorking together
for the children's benefit can build trust among profes-
sionals and parents. Ivith the result that service provid-
ers ma!. begin to view parents in the manner that the)
so fervently desire. i.e., as experts where their children

"EmpAw-ment of families hq@ens

as a resu It of education, s~pj&-t, and
working together." -g--

                   C,~       `_

                               _ --
            ~.     r             -.g.
                            -.- ;
                               -- . ._
                             -.. . . --y
                                 _


are concerned and as respected partners in providing
for their health and education,

  Parents also haye a responsibility to train senice
providers in the culture and unique characteristics of
the families they sene. Only the parents can educate
the community about the special problems ofminorit~
families. for instance. Programs must undrt-stand the
cotntnmiities the!,set-\-e to adequately meet their needs.

  Repeatedly, the delegates insisted that. as respected
partners, they should have a \-oice in the programs that
seme their families. Thev contended that. because the\
have avested interest in the qualit\- of'senice. they-&ould
be involved in all aspects of the programs. from program
design to budgets and hiring decisions. The parents role
should extend from planning and it~~l~lt~tnrt~tit~g pro-
grams to e\,aluatitig them and their setGct3. Met- all. the
quali? of senices affects the parents directly the!, arc the
first to know when needs are not being met.

Barriers to Participation and Issues of Concern
On the topic of participation in health, education, and
social senice systems, parents reiterated many of the
complaints that the\ had expressed concerning alvare-
ness of and entn into the svstems. The frustration with
the y-sterns does not end Ivhen fatnilies become in-
volved, the)- stated, citing the same difficultiesin obtain-
ing information, inflexibiliv in hours and senices,
transportation problems, and language barriers. Nor
does the amount of "red tape" decrease once a family is
participating in the programs. Stated one delegate,
`*Bureaucracy often discourages participation."

  The delegates were also concerned about gaps in
senices, which senice providers often do not address
directly but instead "pass the buck," sending the farnil)
from one provider to another in search of the needed
senice. The supply of senices is often inadequate to
meet the detnand, resulting in long waiting lists or the
use of quotas. For instance, the lack of affordable
daycare was a probletn cited by many delegates.

  The delegates attributed many ofthese problems to
two principal factors: lack of coordination among pry*
grams and the absence of a fatnilycrntered philosoplt\-.

Coordination and collaboration among programswould
facilitate the identification of gaps in senices, as well as
duplication, so that resources could be used more
efficiently to tneet the needs of clients. The implemen-
tation of a family-centered philosophy would ensure
that progratnswould provide parentswith the necessan
information, would have flexible hours, would be con-
veniently located. and would consider their families'
cultural and language backgrounds, not only in their
printed materials but also in their policies and proce-
dures. The delegates also stated that leadership is
lacking at the Federal and State levels, resulting in a
resistance to such changes in the systems.

  The insensiti\-e attitudes ofsenice providersoften
extend to the public, the delegates maintained, leading
to a "national psychology" that looks down on parents
receiving sellices. Delegates shared the embarrassment
of themselves and friends created by comments that
other customers in checkout lines make regarding their
use of Food Stamps. The delegates want the general
public to know that parents whose families receive
senices care about their children and that their misfor-
tulles can happen to anyone.  "Our country is not
segmented into welfare recipients and the rest of us,"
one parent insisted. In fact, most people in this country
benefit from some kind of public funding, for example,
fartn subsidies.

  As we improve our attitude toward families recei\r-
ing senices, the parents countered, we must not let
them become apathetic or complacent, with the result
that they are dependent on the systems. The delegates
repeatedly said that the systems need to offer incentives
to parents to become independent. Often, they said,
programs provide a quick fix for crisis situationswithout
addressing the underlying causes. True healing cannot
begin, they said, until the systems provide a holistic
approach to treating fatnily problems. As one parent
said, "There is a sense of futilin7 on the part of some
families, a lost sense of what they could be reaching for
and whar they might achiel.e."


eligible for sen-ices: yet the parents cannot afford to
provide for more than the child's basic needs. Health
care, for instance, was a major concern; the delegates
reiterated that every family has a right to adequate
health care. Once again, the parents criticLed the
rigid eligibility I-equirements.

  This situation also extends to education, the!
maintained. They contended that inequities in fmiding
in the local school districts automatically precludes
"equal education for all," and middle-class children
often are not eligible for special educational programs.
They urged that these funding inequities should be
addressed.

  Finally, the parents expressed again their frustra-
tion in conhonting the systems to achieve positi1.e changes.
Even parents who are activeI>. participating in y'stems
hesitate to make waves. Said one parent, "If you act
assertively,you are isolated." The!.reiterated the need for
family support groups and ftmding to organize them.
  All of these problems can be o\,erwhelming for

parents at times. One delegate summed LIP this senti-
ment with the following remark: "The children are our
future, and it's scaq."

Solutions to Facilitate Participation

Although the problems may seem o\envhelming. the\
are not insurmountable, the parents stated emphati-
cally. They recommended taking steps in the follolving
areas to begin to break down the barriers to producing
healthy children ready to learn.

  First, the parentsadvocated that training in parenting
skills should begin early, before a youngster becomes a
parent herself or himself. They pointed out that our
youiig people receive litnited training, at best, for their
mostimportantrole. Mostofusfollowthe parenting styles
of our own parents, but not e\eIyone is fortunate enough
to have lo\ing and nurturing parents. Early training in
parenting skills is imperative.

  The parents stressed that, for parents who need
senrices. impro\,ed coinmLu~icationsamong senice agen-

cies would solve many problems. Improved communi-
cations would facilitate entry into and participation in
programs because senice providers would be able to
guide families to the most appropriate program to
meet their needs. The delegates recommended cen-
tral community resource clearinghouses. Such clear-
inghouses should be staffed with culturally sensiti\:e
employees, should provide the paperwork to apply for
senices (preferably through the use of the universal
application form), and offer flexible hours. Such a
facility would lead to better coordinated services and a
reduction of gaps and duplication in senices. It would

,,:

"There is a sense of futility on the--part
of some families, a lost sense of what
they could be reaching for and what
they might achieve."

be a tint step toward implementing a one-stop shop-
ping approach. In addition, the delegates recom-
mended that resource hotlines be established, that
directories of senices be published, and that each
communit\.`s trlephone directov include a directory
of local senices and resources.

  To move tolrard a family-centered philosophy in
the systems, the delegates recommended that parents
be elected or appointed to the boards that oversee
programs. Through their positions on the boards, the
parents could offer input, not only in planning but also
in evaluating the programs that serve them. Parent
input would keep the programs focused on the bottom
line: providing quality sen-ice to meet the needs of

38 Parents Speak Out for i\tnerica's Chiltll-en


families. The delegates added that parents should be
compensated for theit- work and the expertise the\
would bring to the planning and evaluation processes.
M'ithoutcompensation, the!,asserted, tl~eparentswould
find it more difficult to gain the recognition they de-
seiTe as respected partners.

  Etnplo!.ers also neecl to recognize the importance
of families and develop policies accordingl!.. The del-
egates expressed a need fin- flex-time so that the\- cm
more easil!. attend to family matters. The work groups
universally endorsed the passage of a famih. lea\~ act.
The~alsorecomn~ended that etllplo~ei-ssLlpport da~~wc
centers for their emplo\~es.

  Secure and increased funding for programs to
ensure their continued esi~trnce \\~)uld also improve
participation in the sYstcms. the delegates maintained.
Funding is particularl! important Ii)]- p;went support
groups. In addition, the delegates recommended that
flmding mechanisms for education be changed. Fur-
thermore, the!. recommended overall reform of the
educational svstem.

  The delegates urged that a "national ps~cholo~~~"
be developed acknowledging that all children and fami-
lies have the right to certain basic supports for their
health and well-being. This attitude can be achieved
through the media. One group maintained that the
Surgeon General's Office "has the pol\w-" to change
public opinion through an advertising and public rela-
tions campaign stressing this concept. Television spots
could show a respectful approach to families applying
for senices.

  Another aspect of changing the national attitude
is to elect officials who actively support families. The
delegates urged that Americans become involved politi-
cally. Ifwe are to solve many of the problems facing our
families, they said, we must have committed leaders.

  Finally, the delegates asserted that we have model
programs that show us what works. We should adapt local
model programs to other commutnities and expand model
programs for special needs children to fit all children.
Elements of the most cited model program, Head Start.
could be incorpoI-ated in the pi-imaI-\-grades. fori~lsta~~cr.

Transitions Through Health, Education,
and Social Seruice Systems

X11 parents and children experience transitions. The
Parent \Vork Groups agreed that parents, agency offi-
cials. and commmlity people all have roles and respon-
sibilities in the successful transition ofchildren through
health. education, and social senice programs. Being
read!, to learn. they said, is more than making children
rcad~~ for schools; it's also making schools ready for
children. They concluded with what they called the
"rule of the three C's," \\,hich the\. said drives successful
transitions: (:onsistencv. continuity, and coordination
of`srn-ices are all necessaq to promoting healthy chil-
tlrr~v---a~~d families-ready to learn.

Roles and Responsibilities of Parents During
Transitions

Xs they discussed parental roles and responsibilities in
transition. the 12 work groups centered their thoughts
on the following question: How do we, as parents,

ensure a smooth transition from birth through infancy
to earl!. childhood to being healthy and ready to learn
for entering school? One response was sounded repeat-
edly: Parents need to be active participants in the
transition process because they are the best evaluators
of their children's needs, including health and special
equipment needs. To participate in transitions, parents
must be prepared for the transition process. A transi-
tion from one program to another requires adjust-
ments for both parent and child. Therefore, a smooth
transition begins with the transition of the parent.
Examples of ways the delegates have participated in
transitions and prepared their children for them in-
cluded touring a new school or health facility with the
child. introducing children to new people to acquaint
them with new teachers or specialists, and learning a
program's dail\,routine and talking to children about it
betore ilnmersing them in it. The groups all agreed that
m;lkiiiR these preparatioli\ for ati!. transition is impor-
tant to ~.~cr\~)ne's \\rll-heii~g. The parent\ recom-
n~~nctc~l rl~;ir lir2ltll pr~~~itl~*r~. 4~~1iool ~~tlrriinisti~;ltc~t~~.


and senice providersdevelop transition resource manu-
als concerning their programs and services for families.

  ;\greement \vas unanimous that parents must be
good recordkeepers in order to make successful transi-
tions; the parents must also ensure that records are
transferred lvhen a child makes a transition out of one
health, education, or social senice program or system
and into another. These records, the delegates pointed
out, include financial records for program eligibility,
medical records for immunirations and tests taken, and
school records for credits.

  During transitions, as well as in other stages of
working with the systems, the delegates said parents
must demand respect and develop self-esteem for them-
selves and their children. To help ensure children's
self-esteem during transitions, parents must make sure
the children know their feelings about transition are
important. Some parents have a special responsibilit)
for developing the self-esteem of their children and
making transitions smooth. Parents with children in

special programs, for example, must make sure the!
don't fall prey to the stigma that others often create
when children need more than usual senices. The
parents complained that practitioners do not ~llue
parents as human beings. They were critical of people
administering health, education, and social senice pro-
grams who sometimes act as though they own the
children. Phrases such as "parents are professionals,
too" and "label cans, not kids" were voiced throughout
the conference.

  The delegates agreed that parents need to be good
role models, and becoming good models sometimes
means finding good models for themselves first. It also
means that parents need to watch out for other children
in the community, and teach better parenting skills to
parents who don't adequately fulfill the role of parent.

  As the conference was ending, one delegate com-
mented, "I thought I was a pretty good parent when I
came here. But with all I've heard and learned here, I
know I'll be a better parent in the future." The other
delegates agreed with this sentiment and added that the

Conference has gi\,en them a new role: They have been
charged with the responsibility of returning to their
communities to meet with officials of programs that
affect their children and to define the role ofparentsfor
the professionals involved.

Barriers Families Face During Transitions

To open adialog on barriers to successful transition, the
delegates focused on one question: What makes it
difficult for my child and me to move from one program
to another?

  One universal need for making transitions more
successful was for parents, providers, and government
officials to improve communications. The parents felt
that better communication among agencies would de-
crease turf wars, prevent duplication of senices, and
promote the continuity of services. The delegates
voiced concern that, too many times, they have found
that professionals in officeXdon't knowwhat programs
are a\-ailable through office B-even when A and B are
under the 5ame umbrella agency. The parents pointed
out that one-stop shopping is just as important for
smooth transitions as it is forentp into programs. They
also called for development of one universal applica-
tion form for a \ariet!, of public assistance programs,
such as \2'IC, .\FD(:, and Food Stamps. They insisted
that transitions would be smoother if files were tracked
through a computer svstem that is accessible to staff in
all State programs.

  Parents said they need to receive the reports
lvritten about their children so that they can assume the
role of recot-dkeeper. But ifreports and other program
materials al-e to be useful, thevcannot contain technical
-jargon. Instead, they must be written in the language of
the parents. That might mean having materials in
foreign languages for parents who do not speak English
or ha\ing them developed as picture books for parents
who are illiterate.  One delegate told of a Spanish-
speaking mother of a mentally retarded girl who at-
tended public school. For 4 years, the mother did not
know about the child's educational progress, problems,
or needs because evervthing she received from the

40 Parents Speah Out for .I\mer-ica's Children


,f

school 1~1s l\.ritten in Etiglish. and tiotic' of thr ~c1ioo1
staff spoke Spanish.

  Parents repeated that. during transitions (as in
other phases), program materials and staf`f'mnst be srnsi-
tive to all diff'erent t\`pcs of cultures; they must br wnsitivr
to social and financial status, too. The delegates com-
plained that case workers tend to stereovpe and pigeon-
hole people, too often ignoring clients backgrounds and
histories.  Successfitl transitions. the delegates said, de-
pend on everyone ittyolved trusting each other: inappro-
priate communications do not breed trust.

  Another universally noted need was for parents
to be involved consistently during transition. Parent
boards that are proportionately representative ofeth-
nit, racial, and cultural differences give all parents an
important voice in program design and polic~tnakini;.
tvhich can help them prepare their child fc)r transition.
After transition occurs, parents still need to he in-
\.olved. The parents repeatedly cited Head Stat-t as a
good example of a program that keeps parents itt-
vol\.ed; but afier Head Stat-t, pxettts ~tertl to tnakc an
extra effot-t to sta\ itt\ol\.etl in thrit- childtwt'~ orltv~.
educational ol~pot-tiiiti~ir~.

  The delegates said that support groups are needed
even more during trattsitions, and they advocated that
programs work with support groups to make transitions
more positive. But even if support groups are not
available, delegates wict ptygrams should provide coun-
selors to help get parents involved and to prepare them
fot- transitions itito and out of programs.

  Once again. the vwt-k groups cited a need to
decrease the time parents spend on paperwork b!
de\~rlopitig It'45 complex fortns. In addition. delegates
said agrncies must be directed to reduce the time the)
take to decide ati applicaiit's eligibilitv. Implen~entiiig
these clia~igcs ~\~oultl help families make more time11
trattsitiotis aiid provide more moti\.ation for families to
ttio~~c' from otita progt-am to ailother.

  Delegates from ~~11 tou'ns ever)Jvhet-e pointed
out that families in I-m-al .\merica often have no re-

~outx~s itt their hometo\vns to meet some children's

ltcalth. t~drtcation, or social set-\ice needs; travel dis-
tances to a\xilable pro\-iders can be long, and public
transportation is seldom available.

  If transitions are to be successfL1. programs need to
be as flexible as program adtninistrators expect the fami-
lies to be. Flesibili? should begin with program eligibility
criteria and then continue to the program structure and
facilities. Many delegates remarked that family and indi-
\idlral needs still exist lvhen income levels change, but
eligibili& criteria at-e often too rigid to accotnmodate the
transition. Too often. the parents noted, agencies oyer-
look the need for their offices to be open when parents
can gain access to them, after traditional business hours or
on lverkends, for example. X stat-y from one delegate, the
mother ofa child I\-ith physical disabilities, documents the
need fix flesible facilities. The child's classroom contains

a restroom. Howew- the delegate's son, who uses a

\cheelchair. and his attendant were not allowed to use
these f&ilities because he t-equires tnore time than the
other childrrn. Tltev had to go across the school pm to a
communal restroom because the tcachersdidn't~\-~tnt the
other children uxiting in line for the ho\.. .Somr flesibilit\
in the pt-cjgi-atti \\.otlld liaw ttiatlc him feel tttort'~~-el~~otttt
.md comli wt;tblt~. ;ttttl it ~~otiltl liaw m;idt. Iti\ tr~maitioti to
tllc> t ~;I~WI~OIII nrt~c~lt IIIOI.C' lxAti\(,.


  Labor laws need to be enacted to make employs
more considerate of the needs of people with children,
particularly poor working parents. One parent del-
egatesurprisedeven herunderstandingcolleagueswhen
she told that her employer, a hospital, would not give
her time off to come to the Surgeon General's Confer-
ence; she had to deduct the Conference from sick and
\acation leave, which she also uses when her child has a
medical appointment or a day off from school.

  Parents reported that they and their children are
constantly facing new transitions. They suggested that
some of these transitions and their associated problems
could be eliminated, if all levels of government would
stop the frustrating practice of abolishing programs
that families depend on without notice. Cnstable fund-
ing from all levels of government is another frustrating
barrier parents hurdle during transitions in health,
education, and social service programs. The parents
felt strongly that ftmding should not be based on grants
or time limits.

Solutions, Resources, and Partnerships for
Improving Transitions

As in the other stages, improved commmnication dur-
ing transitions was one of the most often cited needs,
and parents repeated their suggestions of using 800
numbers for information clearinghouses and hotlines,
especially for State program information, and creating
local phone directories for resources or computer data-
bases that would be updated yearly with current infor-
mation on various programs. Some delegates noted
that hotlines need to have bilingual operators who are
representative of the calling population. One delegate
commented, "M%ere's l-BOO-MEDICAID? There's no
trouble finding l-800-SEX."

  To address the need for culturally relevant pro-
grams and culturally sensitive staff people, the del-
egates suggested that professionals, particularly the first
points of contact in a program or senice, be given
sensitivity training so they know how to avoid offending

people from various ethnic backgrounds, social classes,
and financial means.

  Parents caid they could use guidance through the
health, education, and social senice systems. One such
guide they proposed was using system veterans as men-
tors for new parents; these veterans could become
personal mentors or could develop resource manuals
that parents new to programs would receive for assis-
tance and advice.  They could also encourage new
parents to seek out community-based groups, particu-
larly support groups.

  Doctors and hospitals could provide guidance to
parents through expanded prenatal and parenting train-
ing. Thev could also distribute information and do
outreach for State and community programs through
packets that would be given to every parent of a new-
born. Senice providers could assign a full-time staff
person to help people with transitions into and out of
the program or senice.

  X number of regions discussed total communi~
o\vnership of programs as another solution to
promoting parental involvement.  In other words,
programr* have to be familiar to everyone in the
community. not just parents. It is also important to
involve parents in e\Auation teams for clinics, schools,
and social senice agencies.

  The delegates fourld no shortage of solutions.
either, for how to decrease paperwork and modernize

programs.  As was previously discussed, eve? work
group adl,ocated one-stop shopping, sensible hours
that fit parent schedules, and the use of a single form for
several assistance programs. Likewise, many parents
proposed that one case \vorker be assigned to work with
a family fcjr all public assistance programs, rather than
one worker for each program. This practice would
allow families and case workers to develop a more
trusting relationship and would reduce duplication of
questioning and processing.

  The delegates also offered more solutions to the
problem of rigid eligibility standards. The delegates
suggested that assistance programs base theirdecisionson
take-home pay, not gross income. One mother said, "If I
brought home my gross pay, I wouldn't need the senices."

42 Parents Speak Out for America's Children


The delegates also suggested that the Go\erntnent de-
yelop hardship deductions that would be used in calculat-
ing eligibilitv for senices and programs. Another call Ivas
for a safe? net for families who don't a1wal.s fit within the
parameters of assistance programs but are needful of
help, even for a short time. An example of such a situation
came from a southern delegate \vho told that she \vas
liling in the north when her doctor said her child \\-a~
dying and needed to live in a warm climate. She and the
child moved to Florida, but the father, Ivho couldn't find
a comparable job in Florida, staved in Michigan. The
woman applied for some assistance but 1~1s told she
lvouldn't be eligible miless she first filed abandonment
charges against her husband.

  All work groups discussed legislative solutions and
regulator relief to some of the harriers to successful
transitions. One remecl!~, the delegates agreed. is that
parents have to support and elect family aclvocatrs at all
governmental levels. ;\nother recommendation is for the
Government to simpli& application and eligibiliv re-
quirements. X third solution involves getting parental
leave bills passed; they hal,e been proposed but now the!
must be enacted so that parents, especially poor working
parents. can have time away from theirjobs lvithout being
penalized when a child needs to see a specialist or go to an
interview for a new educational program.

  X number of delegates expressed concern that
laws supporting families have been enacted but are not
being enforced, at least not everywhere. Delegates
from New York. New Jersey, and Puerto Rico, for
instance, made a laundry list of needs that delegates
from the Virgin Islands said their territorial govern-
ment is addressing through the provisions and man-
dates in the Education for All Handicapped Act (Pub-
lic Law 99-457)) which targets children aged 0 to 2 who
are at risk.

  The parents did not let themselves off the hook as
far as developing solutions was concerned. The parent-
directed solutions included acting assertively on the
child's behalf. teaching children their rights so the\. can
become their o\~n advocates, training them to be coop-
erative (even when others are not), flelping them u11-
derstand it's not their f:nult lvhen difficult teacher4 or

caregivers can't be circumvented, and confronting teach-
er-s who don't respect children or who belittle them,
especially in front of other children.

Programs Tha.t Parents Grade A+

r2hen the delegates were asked to make a wish list ofwhat
a model program would be like, succinct descriptors were
gi\-en quickly. In summar), the parents said programs
must be child-centered and familv friendly, be easil!
accessible, have broad eligibility standards, be
antidiscriminatory and multilingual, be well promoted,
provide individualized senice, be staffed sufficiently, and
have hours of senice that are convenient to parents.

  Parents also cited a number of programs that they
felt were exemplav in their administration or service.
Public Law 99457, for children at risk aged 0 to 2 years, is
a good example of a seamless and effective system. New
parents need to be targeted for special attention. Public
Law 994.57 should be expanded to benefit older children
and children who do not have special needs, and should
include family planning and prenatal and neonatal ser-
\ices. More x-accines could also be delivered through this
program. Other generic programs, or those based in
man)- States, inchlded Head Start, school-based clinic
programs, Home Instruction Program for Preschool
Yomigsters (HIPPY), workshops on the development of
Individual Education Plans (IEPs), United Way senices,
Pathway to Understanding, and Family Resource Cen-
ters. Local or regional programs are listed in the descrip
tions of individual work groups, which follow.

  The delegates offered these recommendations
with the hope that many of them will be implemented.
One parent concluded, "We'ye said all this before; is
anyone listening?"


Region 1 delegates stressed the im-

CONNECTICUT

MAINE

MASSACHUSETTS

NEW HAMPSHIRE

RHODE ISLAND

Catalog of available services, explaining
ehgihiliecriteriaand henefits,~\~ould help

VERMONT

parents as they enter the systems. The delegates rec-
ommended that application processes be streamlined,

beginning with a single application form, ifpossible, for
all services. Apphcation forms should be adapted to
linguistic and cultural differences. The blind, the
hearing impaired, and those with low literacy le\.els
need special attention. Social senice and health care
providers nwd to adjust or stagger their offlice hours for
wrking parents. The parents' transportation needs

also should be addressed.
  To parkpate fully in

`:Region `I
"Recommendations at a Glance


:;

`Awareness and Entf'Y
:" -)r Make information on health, education, and social services aVailable in
public libraries
2: - * Streamline the procedures t0 LIpplY for services
: : * Adapt app 1icaGon forms to kg&k and cultural differences

j Sr Offer flexible hours for services
ii Sr Address transportation needs
c
:
; i Participation
I : * Encourage parent participation and. advoc;~;ram policies and
1 I * Inform parents of their rights; pubk~e p


  parents' options
. * Make service providers accountable
i * Understand he needs of parents, particularly smgle parents
>\
"Transitions
* Determine readiness for transition by abilities and developmental s%Fs
   rather than by age
* Maintain consistent philosophies among programs
   * Train parents in the curriculum being used and demonstrate WV to

  social status
j

the health, education, and
social 3el-rices systems, the
delegates strongly advocat-
td that pal-en ts vote in na-
tional and local elections,
join or form nehvorks ill
tlreircorllmunities,andtake
a more active role in thei
school s\3terns.  The\
\ieI\wl advocacl, for their
children as a routine part
of parenting in their rela-
tionships wiith teachers,
doctors, etc., and not
.just in the realm of leg-
islative activities. Thei.
stressed that senice in-
stitutions need to he
more flexible philo-
sophicallv so that
they can be more
tiparent driven"and
that parents should


participate lvith schools aiid wr\icr pro\idet-s as
respected partners. For instance. patwit\ should be
allolccd to attend in-ser\-ice training sessions fat- sei7ice
providers. and they should se17e 011 boards that direct
the activities of programs. Paretlts should be informed
of their rights as thev participate in the vstems: i.e..
policies and options should he not onI!-\vritten but also
puhlici~cd. Policies that rcsttlt in children beitig takrti
from their parents should he scrrttitli/ed closeI\-. Pat--
cnrs should not he aft-aid to rspress thrit- t~txds. The
delegatesalso complained that social set-vice and hralth
cart sy\tctns at-v rigid. bttrvattcratic. alid cl\-rt-special-
ired. lvith the result that parrtlta fwl lost It-ithitt thcsr
svstems. The dclcgat~,si\.ct-~ co~lcertletl that the wt.\ icv
providers m-e not accotttital~le fiti- the quality of'scr\ice
they ptxnide. Pat-rnts need support from the s! \tcnt\
and from their cwiplo~ws (t'.,q., flrsihlc ltot~r4) to
participate. Provider\ and emplo~~ct-\ must recognk
that parrnts, particttlarl~~ single parents3 can't "do it
all": the\ ha1.c ph!Gral and emotional litnitationc (wch
as lack of time and an al~ttndanct~ of strt35).

  Parents ft-om the Se\\- England States ~vtw coot-
cerned that children are stthjccted to transitions too
often sitnply because their age dictates theI. move into
a new program. These delegate\ felt that instead of
chronological age, abilities and dv\~elopmental stages
should be the factors that determine readiness to mo\.e
on, up. or out. They noted that this cancerII is especialh
important for childt-en with special needs. Another
concern peculiar to this group ux that changes in
philocophl. among programs impede successful transi-
tions. As a solution, the!. suggested that schools host
parent\\-ot-bishops that demottstrare the cttrriculttm and
tell parents how they can complemenr it at home.
Region 1 delrgatesechoecl the sentitnentsofmost othet
groups concerning how pi-ograms and people must he
sensitke to differences in ethnic. financial. and social
status. Bttt this group added a unique parental role to
the equation: Mothers and fathers must make sure that
caregivers and setTice providrt-s understand and appre-
ciate individual familv \alttes. as 1~~11.

in Srw Hampshire. uhich coordinates nutrition educa-
tion itt schools: the Yppet-\.alley Support Group in New
Hatnpshit-r and \`ermont; G-owing Cp OK in Bristol.
\.r.rmotlt: Eat&~ Childhood Group in Middlebury, Ver-
tnottt: <:ollal,ot.atiotl for Children in Massachusetts:
Eat-l!. Childhood Network in Aroostook, Maine; Devel-
oping <:apahlc People Transition Task Force and Child
Find, both in Rhode Island.


                    entering nealtn, eciucatlon, and so-

  .                 cial senice systems should network
               with more experienced parents and

    -- -.           play active roles in parents' organi-

     -~.~          zations. The delegates also advised
                  1-. --1  that resource coordinators be assigned
           -. to f;nnilies to help simplify the entry
              process and assist the parents as the\
       learn about and access the programs they need.
      Application and enty' procedures are far too daunting;
       parents can feel lost tning to enter the s\`stem. One-

NEW JERSEY


NEW YORK


PUERTO RICO


VIRGIN ISLANDS

Indicating their commitment to finding solutions to the prob-
lems discussed, the Region 2 delegates held an impromptu
meeting on their ow time to outline a proposal for establishing
a model health, education, and social senice system. The
proposal calls for a Federal initiative mandating a partnership
across Federal agencies, the Office of Management and Bud-
get, key Congressional committees, and families representing
local areas. The initiative would establish a formal structure for
implementing the following principles at all local levels:
* A client- and family-centered program philosophy that
  emphasizes parent involvement in children's programs.
   and that is accountable to the individuals sen.ed.

Ir A creative and flexible atmosphere Gthin the systems
brought about by regulatory relief from bureaucracy
and "red tape."

* The standardization of eligibility requirements across
all service programs and simplification of the process for
establishing a client's eligibility.

Ir Easier access to services provided by centralized directo-
ries of senices, one-stop shopping, and flexible hours.

* An integrated approach to senice deli!-et-y using unified
case management and follolsup.

t The rotation of senice personnel and continuous train-
ing and cross-training to reduce burnout and promote
sharing of information across programs \Gilthin the sys-
  terns.

t Increased parental community involvement. Parents
could make valuable contributions, especially for public
relations, outreach to new families. and advertising of
senices. To promote parent involvement, use a commu-
nitybased approach and allow for flexible work sched-
ules. Seek collaboration with businesses, churches. and
other community organizations.

stop shopping for senices w;1s strongh~recommended.
Office hours must be built around the needs ofworking
parents. In addition. agencies need to expand their
public seiTice aiiiiOUilceillellts and make a greater
o\,erall effort to keep parents informed about assailable
resources. The delegates recommended a toll-free
information hotline, along Ivith support groups and
other programs designed to make parents, especialI>
teenage parents, more a\vare of their responsibilities.

  The Region 2 delegates felt that the parents' role
in nettvorking does not end with acti\-e participation in
the svstems. l'arents should enlist other families into
programs. Thy delegates also agreed that parents
should hark a stronger role in de\.eloping agency pro-
cedures and policy,. Parrnts neecl greater representa-
tion on agencl' ad\-isor\- boards. Parents also should be
in\ol\.ed in reforming health. rducation, and social
senice systems to brnefit families. For instance, the
delegates cited numerous problems lvith Medicaid,
such as lack of phvsicians who accept Medicaid and
long \vaiting fists for those \\.ho do. In addition to
needecl reforms in sellices, the delegates cited a need
to change our society's attitude tolvard families receiv-
ing assistance from the systems. They are stigmatized in
the public's perception as lazy and uncaring, and even
the social senice lvorkers often behave rudely toward
parents. This situation causes high frustration levels for
families who participate in programs and prevents
others from participating. The delegates felt that this
behavior by senice providers is a ymptom of employee
burnout, and recommended that employees be rotated


to different positions Ivithin their agencies on a regular
basis. This solution \vould also provide employees rzith
a lvider range of experience and information about
how their agencies r~ork-iIlforrnatic,11 that the!, can
pass on to parents.

  Delegates from Region 2 considered the parent's
role in rransi tions as acting assertiveI\. or aggressiveI\
and emphasized that it must begin as soon as a child's
needs are diagnosed. It is the parent's responsibilit!,,
the!. said, to demand access to and information about
the prenatal and postpartum care their child \vith
special needs might reqttire. Ho\vever. to encourage
parents to act assertivel!.. the\. agreed, the Sation must
de\-elop effective patent education. That education is
linked to another need cited h!. Region 2 delegates.
The!. Ivanted the Surgeon General to knor~ that the
countm needs to establish an infra\tructttre to assist
parents through their children's continuous transi-
tions. Another important issue to this group \\`as the
tack of quality control in senices. They remarked that
unless quality control in health, education, and social
senice systems is consistent, transitions IAll never he
better than mediocre.

   Puerto Rico's
Project ESPX (Es-
cuela Pam Padres Ad-
ultos, Project School
for Adult Parents) KU
singled out as a success
ftil parents' support
group. The New York
Foundling Hospital
teas also mentioned as
a model program. In
New .JerseY, the State
Health Department's
Catastrophic Illness in
(:hildren Fund provides
grants to families lvho

Awaraness and Entw
+ sUDDOrt parent networks
                   3. ~._
A simoli& application and entry procedures
                    . -:--

* R cruit parents to enlist other famifies
atticipation
* PFovide for parent involvement on agency advisory' boards
* Se& parent input for needed reforms in the systems
* Seek ways to change societal attitudes toward families who receive
I
\\  assistance
: I * Rotate employees to avoid burnout
11

~zould other\vise he
nanciallv de\astatcd
catastrophic illness.

  In addition, the Region 2 delegates recommended
establishing a Federal initiative to institute a formal
structure for implementing several principles in health,
education, and social senice systems. In implementing
this initiative, the Region 2 delegates recommended
the fotloGng approach: (1) linking it to America 2000
or simi tar program; (2) involving the private sector; (3)
borro\ving strategies that work from existing model
programs and integrating them vertically and
horirontalt~intocommuni~programs; (4) designating
the Surgeon General to head the initiative and enlist
the participation and cooperation of all relevant Federal
agencies: and (.?r) recruiting parents who represent the
diverse communities of the United States to be the
liaison henceen government, communi?, and business
representatives in the initiative.  The delegates
recommended recruiting and organizing these parents
through a national clearinghouse and compensating
them as experts for their work on the initiatiw.

endah ms at a Glance

L

? g
ti ;. iTransitions
zi * Educate parents t0 act asseruvely on behalf of their children
: :

ii sr Estdbfish con$tent qUali~-COntrol measures across `Ystems
sr Establish an infrastructure to aSSiSt fadies in transition


i.
:.


DELAWARE

DISTRICT OF
COLUMBIA

MARYLAND

    importance of sprcial programs for

.,     teenage parents to help them cope
    I   with theil.roleasparentsand tomake
,.    them aware ofavailable senices. The\,
   alsoexpressed that entn'into programs
   JS~II~~ be facilitated by barrier-free
   health care centers and resource coordi-

PENNSYLVANIA

     1latoi.s for special needs children.   lo
inform parents ahotlt available senices, lists ofsemices

VIRGINIA

WEST VIRGINIA

coUld accompany birth certificates; private doctors
~h(>t~ltl CIII~~+X ha1.e such lists on hand. The special

needs of foster children demand greater attention;
medical charts and equipment for foster children \vith
special needs should follow the children in a timeI\
manner-. Family leave would allow parents time not
onl!. to address their own infants' special health needs,
htlt also to help other parents and their children.
\4%ile all regions discussed legislati\re solutions and
                   1

latory relief to some
llems families face, Re-
3 delegates were the
ones who discussed
x~rting the fetal alco-
bill as part of the sohr-
I to making health!
Idren ready to learn.
is bill \vould prohibit
tallrants, bars, and li-
or stores from selling
Yohol to pregnant
men. ~~lso, because
pport groups are so
iportant, funding
lould be provided to
ISrdin them and cover
Isic operating costs.
dditional fnnding is
-quired to prevent turf
~attlesamongagencies
nd within the com-
nunities thev seme.

a Glance

j 1 Awareness and Entry
"i j, Establish special programs for teenage parents
\\ * Est&lish barrier-free health care centers and prO\ide resource
coorsinators for special needs children
* Distribute lists of services with birth certificates
* pass a family leave bilk
Sr pass the fetal alcohol bill
f Provide funding for support groups
* Expand program funding to prevent turf battles among EdUs
  programs

,ea

elp administer services
  nnlirvmakin~
  -.,, r- Jvide better training for
    resources, decrease bureaucracy+
`pLc' uJc u-ffectively
  _ __.-o p pn chil&t=n with special needs at

ersons with speck-al needs or

a case-by-case basis


  To enhance participation in the systems, the Re-
gion ?J delegates stated that programs should he commw
nit\' b&d whenever possible, administered by people
who live in the communities. The delegates also recom-
mended that the recipients or part-time recipients of
senices be hired to administer the senices as ~~11. to help
bridge the gap behveen bureaucracies and families. The!.
liewed the role of parents participating in the systems as
that ofdecisioninakei-s~\,ho helpeiiipo~\.ei-familiesi-ecei\--
ing senices. although the\. admitted that the swems do
not allow for parental in\ol~ement ill policymaking. The\
were most concerned about the lack ofcultural wnsiti\-it\
displal,ed b>. the s\.stems. lack of training for scnice
providers. and the negati\r stereo~ping of wcipirnth of
senices. They also complained about thr s\.strms' bu-
reaucrac\' and the poor use of resources. resulting in the
lack of senices ii1 some areas. and the lack of.infol-lllatioll
about senices. The delegates ft-om the mid-.\tlantic
States advocated financial solutions to parents' needs.
They suggested creating tax credits for parents ~410 keep
children with special needs at home (rather than institu-
                      
tionaliring them at &wrnment expense), creating tax
benefits for employers who hire individuals with special
needs or their parents, and making funds a\-ailable for
affordable daware.

  The Region 3 delegates maintained that transitions
would be facilitated if programs focused on prevention of
problems before crises occur. Although preventive ser-
\ices may require a higher initial inrestment, these par-
ents asserted, they would present significant cost savings
to the Go\.ernment in the long term.

   The\, also commented that there is a lack of

continuitv of senices as transitions are made Mithin the
systems. Delegates told how some children with special
needs were given assisti1.r tIeVices to hrlp them in
school but that the equipment remained the school's
property. In some cases. the equipment !\.a\ not c~en
allowed to leave the buildingwhen the child went home
for the evening;  e\pn more often, a child was not
allo\ved to take the devices to a new school-wan one

in thr same system-as he or she matriculatrd. The
delegates \varnrd that thcw policies do not promote
smooth transitions fi)i- parents or childreli. .I fathrl.

from Penns!%.ania was able to add some hope to this
discusGon when he told how his State had bypassed the
problem ivith a solution that benefitted evel?one. In his
State. parents ofa child \vith special needs can spend up
to Sl ,.X0 annually on assistive devices such as reading
boards. The parents buy the device, but are reimbursed
b\. the State. Their child can use the item until he or she
outgrow it or leaves the State school system. Then the
tyuipmellt is returned to the school, where it becomes
a\nilabIc to another child.

  This regional group also advocated that solutions
must he systemic: programs and services camlot con-
tinue to respond to problems on a case-by-case basis.
One parent said her child's school had rerouted a bus
w it could transport a child \vith disabilities. But that
change ill the route meant that some children rode the
bu4 4 hows a da!.. The school responded to a particular
case, not thy u~nclerl~ing problem that it did not have
rnough buses accessible to children with disabilities.
IChen another child \vith disabilities needed transpor-
tation, the problem had to be readdressed. The parents
maintained that the school svstem should have broad-
ened its solution the first time by buying another bus
and hiring another driver. a solution they felt would be
cost effective in the long run.

Model programs cited by the Region 3 delegates
include Pennsylvania's Development Disability, which
funds support groups, and the Communication Coun-
cil, which involved parents as it rewrote the State-level
standards for special education; the District of
Columbia's Equipment Loan program, which funds
equipment for special needs children, and the Parents
and Friends of Children with Special Needs, a parent
support group: MaFland's Special Mothers in Train-
ing. a 5lveek training program for parents with disabili-
ties, and New \`isions. a program that uses parents as
case managers: M'est \`irginia's Public Health Screen-
ing, designed to meet the needs of parents who do not
qualify for hledicaid but cannot afford health insur-
ance: corporate Xdopt-a-School programs: and\`irginia's
Department of` Education /Division of Special Educa-
tioll I~ro~1-;m~~. \\,liic.h pro~id~3 inf~~rniation on c.hiltl
&~\~10I""~1".


Region 4 delegates advocated that

ALABAMA

all Federal programs share a uni\.er-
sal, easy-to-read application form to

FLORIDA

GEORGIA

KENTUCKY

MISSISSIPPI

NORTH CAROLINA

SOUTH CAROLINA

TENNESSEE

     .: b   : help simplify the entry process for
      .:   -J parents. X central community re-
      source clearinahouse, or referral cen-
     ter, supplemented by a toll-free hotline,
    could also facilitate the process for enter-
       x2,
    `y mgparen ts. The eligibility criteria should
be the same for all programs, but they should be more
flexible. Presently, the systems encourage "staving
poor" to meet these rigid criteria. They stressed that
incentives are needed for families to move beyond
assistance. The delegates also recommended that edu-
cation in parenting skills begin in junior high school.
OverAl, the systems would be more responsive to
parents' needs as they participate in programs if the
parents had greater involvement in policymaking and

_
ecommendations at a tilance

    form and simpW the entry process
      learinghouses, supplemented bY a
e eligibility criteria and incentives for families to move

        g and training of service providers
                 attitudes, physical limitations, distances,
  professionals who know the cornmu*%`, its resources , and the
* Provide
issues facing famities
* provide job stability and affordable housing
jc E&dkh family leave POliCieS
* Provide better daycare and respite care services

nts in peer group visitation programs . .
Y time to reassure children during transItions

P'
be

111
dig11
The

wa,
bar

at

1011

ter-

ho

ire

ati

  en

  to

  i-e

  as

  IT
m tl

  M

  r
  f

   1

`pecially in the training of
,ol*iders, many of whom
shave as though they have
:) sense of' the tvorth and
lity of needy families.
Se families hce lan-
Te barriers, attitudinal
riers, ph!,sical barriers
health care centers,
g distances to the cen-
s, and inflexible office
urs. M'orking parents
ed special consider-
on. As a rule, the par-
Its have no choice but
adapt to the systems
aquirements, whereas,
cone parent said, `The
ionev should follow
le child, not the other
:ay arormd." The\ ex-
lressed a need for pro-
`essionals who knol\c
he community, its re-
sources. and the issues


facing families. The delegates stressed that job stahilip
and good housing are critical components of health.
Parents need fatnih, sick leave policies and release time to
obtain the senices thev need. Housing ordinances need
to he enforced. Also needed are better clalcare set-rices
and respite care srnices fix overburdened parents.

  Se\,eral regionsconsidered some untraditional~~a~s
toitnpro~ecotntnLunications to facilitate transitions. Regiott
3 delegates made a umique t-ecoi~imcndatiot~: In\-olve
parents in peer group lisitarioti programs. One mother
told how her comtnunit~ solicits experienced parents to
Gsit the homes of new parents and offer friendl!.,
nonthreatenitigad~ice about programs. set~ices. support
groups, and ot-gani/;ations that are available to them.
These Iisits, she added, are made to all ttew parents. not
just parents of children with special health, education. or
financial needs. The parentsfixn~l the southeastern States
also pointed ottt the impot-tattce off;ttnilics' makittg timt
for children hct\\ven trattsitions: e\w7`oLt(a needs ;I bt-wk.
thevcaid, especiall\~~vhen a tt;tnGtion it1vol\x,sa cltxtge in
marital \tatttb. li\ittg arrangc~nt~nt~. ot- hwltli caw.

  Some model programs cited by the Region 4
delegates ittclude Kentuck!,`s Family Resource and Youth
Senice Centers. created as part of the Kentucky Educa-
tion Reform Act and operated through the schools to
benefit children and tamilies at risk; the Eastern Ken-
tucky (:hild Care Coalition, a private resource develop-
ment +genc\. that offers training and assistance to
childcare pro\-idet-s and families; and Mississippi's Fatni-
lies as Allies. a network of families with special needs
children. The Florida delegation shared materials on
several public and pri\ate progratns from their State:
Infants & Toddlers; Florida's Interagencv Program for
(Zhildwn and Their Families. which has established the
Directol-\.ofEarl!-~~hildhoodSenices,accessihle through
an 800 telephone number: Collaborative Adolescent
Parenting Program (<:.\PP), an intergovernmental, in-
tcragency. conlmttttit!,-based effort to support teenage
parrnts: Faniil!.(:onnections, lvhich provides services to
lowincome teenage ltarents, and Family Interaction
Sow (FIS), a family support program for recovering
pregnant and postpartum addicts, both sponsored b)
the (Child Care (:onnection of Broward County, Inc., a
prifittc, nonprofit organization that supplies Title XX
childcare: Casa Madonna, an aftercare progratn for
Hispanic substance-ahusing mothers, which is spon-
sored by the Miami Mental Health Center, Inc.; The
Bridge.sponsoredbVFalnilyHealthSe~ices,Inc.,which
provides a mix of services to young mothers and their
children; and Pro.ject MITCH (Model of Interdiscipli-
nary Training for Children with Handicaps), which
provides training to parents and other care givers,
through fltnding from the Florida Department of Edu-
cation to the Florida Diagnostic and Learning Resources
System/South. In addition. the Department of Health
and Rehabilitative Senices sponsors First Steps and the
Community Resource Mother or Father Program.


LMegates ft-otn Region 5 agreed that

ILLINOIS

INDIANA

MICHIGAN

MINNESOTA

parenting skills should be part of

  -y    every child's schooling and that re-
i"<~, -
   r: 2.
-$+: _ i  sotwces should he available for the

`/ ~~,L..~   c~ontitnting education of parents in
          j tht`se skills. Better parents will become a
    stronger and more effective presence in
   ;   their communities. The?, will assUnte
     greater responsibilitiesin theirlocalschool

OHIO

s\`stems. both in policvmaking and in day-to-da, pat-ticipa-
tion. to help counter the chaotic forces that act on

WISCONSIN

children as they enter adolescence. The Region .5 de]-
egates complained that the middle class is excluded from
set3ices. The!, stressed that e\.et-ytne needs access to
adequate health care and that ottr Sation should protide
"eqnal edttcation for all." Th e\ pointed OLIN that the goals

of the Sttt-geon Genct-al's ittitiati1.e should go beyond the
!`eat- 20(N). Other barriers to entq into the systems that

/

i%gion 5
~`Jkconmxndations at a Glance

:i~wareness and Entry
*Provide training in 1

.

* Don't exclude the middle class ~tot~t ~1 *IL.-J
I i jr Continue the Healthy Children  7 to Learn Initiative beyond the
                 Read)
' year 2000
: ' j, implement one-stop shopping
i : jr produce a guidebook of services and include a director? of local services
:  in cOmmuniT telephone directories

Participation
i * A mparty services with education
* pz$de m&hanisms for parents to get answers for questions or 10 voice

L#i-    complaints     . --.-I....~~~+ in nob d~&onS

* All04 greater parent tnvwvc3~~~zLG .-- r    -- .
' *Forge stronger links amo ng s&x&, socia serwce systems. and local
* prioritize needs before spending funds and make programs accoUntable
for how funds are spent
* provide for unbiased evaluation of programs
* Address he causes of families' problems and prOvtde healw. not

"band-aid fixes"

   fife skills, beginning at an early' age, t0 prepare children t0
        orks and outreach programs
`$ "A;p,~~~~ ~r~~~~e;~ as the Administration's advocate for families

cited are long waiting

,)rsenicesandinflexibil-
' the swtems. They rec-
lended a one-stop-shop
approach to services
providers \Vho are in-
ted aboitt a\,ailahle re-
`-c-es. The!, suggested
during a gUidebook of
ices and including a di-
tOI of local senices in
17' cot~lt~~Ut~ih's tele-
one director-.
.is f&nilies partici-
te in programs, the
`eadtes asset-ted. edit-
ion should accompam.
: set-\-ices rendered.
tey; complained that
e programs are not
Inil!, centered, and
at parents j\.ho act
isertivel!, to haye
leir needs tneC 211-e
iolated. The social


service sI9em ~2s criticized for ha\ing no bllilt-it1
mechanism by ~\~hich parents can get ~I~SNW~~ to theit-
manv questions and a sympathetic car for their
complaints. The sytems are genrrall~~ pcwt'ijwl as
bureaucratic. rigid, and inseiisiti\.e. Parents ucwl to
playagreater role in polic~~clrcisions alit1 act a\ ad\-isors
to programs. For instance, manf. of' the delegate\ fc'lt
that parents should \vork jvith their schools to explore
the possihili~ofdresscodes and establish otherpolicieh.
M'hen this group discussed the parental role of being
an advocate, they commented that pareuts rived to
take this responsibilitv to the fullest. The\. must be
involved in the school or program, know evenone
from school board members to administrators to
teachers, and become a presence in their child's
education. Schools, in turn, need to forge strongel
linkswith the social sen-ice systems aud local businesses.
Another important issue to the Region 5 delegates \vas
that needs must be prioritized before money is spent,
that programs must be accountable for how the moue\
is spent, and that programs should he e\aluated hi,
unbiased parties. The delegates expressed that
programs must address the underlying causes of
problems families face and that sellices should pro\ ide
healing as families participate, not give them just a
"band-aid fix."

  The Midwestern delegates repeatedly said that par-
ents need to begin at childhood to prepare their children
for the ultimate transition fi-om child to parent. The)
advocated reaching out to children to show them how to
be parentsand to explain the responsibilities thatgo along
with the role. The\, recommended that schools teach
basic life skills, beginning at an early age, so that children
b'ill be prepared to parent the next generation.

  These parents also stressed that communication
among parents and betw.een pare'uts aud programs is
kr~ to successful transitions. They stated that strategies
to improve communication should include outreach
programs to draw new families and to trulv affect the
communitv. Region .T, delegates looked to the Surgeon
(General to be more than a partner with them in making
health~~ children ready to learn. They agreed that she
must be the atlillinistration's advocate for families. She
must he among the ranks of people who hold health,
education. and social sewice systems accountable for
ensuring that children and parents can make transi-
tions btT\\WW progran1s smoothl~~.

  .\lodel programs cited by the Region 5 delegates
include the Illinois Governor's Education Initiative,
r\-hich iurwl\.es parents in school policy decisions. Cn-
der thih program, % communities discussed the reallo-
cation of funds to allow State agencies to coordinate
their efforts and develop stronger ties with the school
system. Another Illinois program, Families With A
Future, funds prenatal care, home visits, a children's
clinic. nursing care, and certified advisers who coach
mothers as they enter the social semice system; \-olun-
teers provide transportation. In Minnesota, the Leave
No Child Behiud program funds learning readiness.
Other programs in Minnesota include Challenge 2000,
Parent Involvement, and Learning Readiness. The
Ohio delegates cited Family and Children First, and
Iudiana parents praised the Indiana University Medical
Center's James M'hitcornb Riley Children's Hospital as
a model for caring for sick children and supporting the
familie\ during times of crisis. Michigan programs in-
clude the IAatino Outreach Program in Detroit and
Pl+Tt l'ptow


ARKANSAS

families should be a nationlrride
priority. They also strongly adyo-

LOUISIANA

x ;
;..- ,r
     .,- r  cated regulation of the insurance
  c .5 .'   c
       ;  industry. Insurers can raise rates.

NEW MEXICO

: den!. coverage. aud cancel policies
arbitrarily, M'ith the result that families

OKLAHOMA

either cannot afford health care or have
to enter the social senice sr'stem and

TEXAS

sometimes give up jobs and income to meet rigid
eligibility criteria. The delegates also pointed to loo
keels of priiate participation in health care senices,
saying that if pro\Gders lvere reimbursed at competitive
rates. the senices M'ould improve across the board. The
providers need to be better informed about available
sell-ices and IXSKI~ to pass that information on to fami-
lies. X resource directo?, and a toll-free information
hothnt~ iri each State Ivere strongl!~ recommended.

I

commendations at a Glance

o prevent arbitrary cancellation of

in health care services by rrlmbursmg

convenient locations
`; J, ~~~~ parenw mOre crea&e input md pokv input and the opportuniy
b7
i:
:  to evaluate programs
;!

i lTransiti~~s
!{ * Maintain effective communication between parents and careglvers,
ii
;i -or Frovide mainstreaming for children with special needs in all
   a&ularIy for foster parents

   communities
i: * ~~~~ partnerships among agencies that provide health and medical care
.,
   1  to better serve families

In addition, health

1 providers should be
ched and sensitized br,
ents who are participat-
in and have experience
h the systems. ;\t
fsent, families are not
rceived as partners!vith
otiders and do not feel
spected. The delegates
Irned thatparentsrvith
gional accents ha1.e to
? careful that they are
ot perceked as less in-
rlligent merely be-
ause their pronuncia-
:OII is different or their
peech patterns are
lo\\er. The point of
ontact for services
both for parents en-
ering the systems and
-hose alreadv partici-
pating) should be an
individual who is


representative of the local communit~~. Services are not
oriented around family needs: families have to tral,cl
long distances to appointments because of the limited
number of providers in these States, and then they are
forced to wait and waste time. Services should be
located as near families' homes as possible. M'hy not set
up on-site facilities so that parents can attend to other
important family business. such as doing laundry? The
delegates insisted that parents need more creative and
poliq, input into the systems and should be gilwl the
opportunity to submit evaluations of pro\-iders.

   There was national consensus that successful tran-
sitions begin at home, but Region 6 delegates States
added the advice that some situations demand special
efforts. They commented that foster parents must be
careful to validate their children's feelings at all times.
Foster children have an extraordinary nevd to develop
their self-esteem. Without this esteem. the parents said,
children will not get the maximum benefit from transi-
tions. Communications with children and caregivers
has to be two-way. M'hile it is imperati1.e that parents be
~~0~11 acltocates for their families and rccogni/e thcif-
~ONW- as parents, thew dr~legates agreed. it is a1v1

critical that the\- listen to the children and the profes-
sionals taking care of them. Parents in Region 6 also
pointed out that mainstreaming is not available in all
communities, but it is a w~iversal right ofchildren to be
allou-ed to mainstream. Parents, thev said, need to
demand this right for their families. The Region 6
delegates stressed that access issues must be addressed
and that agreements are needed among agencies to
form health and medical partnerships to better serve
our Nation's families.

  The Children's Hospital in Arkansas, which al-
ready has a hotline, was cited as a model program.
Other Arkansas programs include Arkansas Better
Chance, Child Find, Children's Medical Services, and
Focus in Blytheville. Adult Learning Center in Shreve-
port, Louisiana, combines infant care, literacy training,
and a welfare office. Dallas, Texas, has a qualit!, infant
care program for teenage mothers and helps them with
the transition to Head Start. Another Texas program
citedl1.a~ the Childcare Management System in El Paw.
Oklahoma programs include the Illstilute fi)l (h&l
.\~~()c;IcI. !%)~Jl~~l' bkll-1. ;Illcl oilSi%


MISSOURI

NEBRASKA

      among senices forces parents to make


    ; .-   fi-equent Csits, compounding their dif-
    ficulties. Eligibility requirements are in-
    consistent from State to State, and par-
ents \V~O relocate in neW communities have to repeat
the lengthy application process. Because information
on senices is tacking, in Missouri, some neighbors go
door to door with flvers and other information.
As families participate in pl-ograms, the Region 7
delegates recommended that parents seek an &who can
be relied upon to supply accurate information. In turn,
parents should share their knowledge of the programs
J!ith othel-S. Parents also have a responsibilit\ to establish
a positive interaction I\ith thecaser\-orker togive feedback
       L on the senices receilred. In
               deve
           ship:
                 that

                first

                 ha12

                 tier

at a Glance

      areness and Entry
    duce distances that families nlUSt tTdVel fOr SerGceS
%h     *Improve consisteny Of ServicfzS from urban to rural areas

  -1 -
r\y    I * ImpTovc! cO0rchnanOn of services
     *Make eligibilit)r requirements consisW2lt from State t0 State

loping these relation-
s, however, theywxned
parentsmustkeep their
priority and maintain a
mce between pdrticipa-
1 in program activities
lfamilyiife. Theyfeared
Itparentsmight fall in to
? tl-ap of trying to do
elvthing and ydnled
at pro\idersshould not
.erwhelm parents with
10 much information
td too manv activities
the same time. Par-
It involvement in pr*
ram planning would
lelp prevent these
)roblems, they said,
tnd parents also
<hould help set goals
for the programs.

Long distances to health care ren-

IOWA

KANSAS

       It'rs are a problem in this part of
     the Midwest, and the quality of ser-
   .* .-. %-
-,.-        >  {ices is unet'en in urban and rural
      areas. The lack of coordination

I      1   \\PmticiDation
             . -_--- I
     *Promote parent support groups
I             overwhelm parents with too manv activities


                                          115                    . . -.,,  `Lx

*Involve parents in program plannw
*Provide more year-round prograr-
*Provide f&&~ Head Start or locate Head Start together wm llue p
or other childcare programs
*Provide childcare for special needs children
   zation from parents about children's specific needs
  nest answers to parents' questions rather than "beating

th,

Of

to

a1

at

er

mod&d after the Nebraska Family Policy Act      g
                                   h
     professional groups,
      cy-t-gew ~0UA-Q~~ .
                              -7         F
    and State-to-State partnerships         i

                                            !


  The Region 7 delegates expressed a need for
more year-round programs for their children. They also
suggested full-day Head Start programs or collocating
Head Start with providers ofTitle XX or other childcare
programs. The\ would like to have childcare aLiilable
for their special needs children so that they cm attend
activitirs in lvhich their "normal"cl~iltlrc~~~ are imolvcd.
They described ho\\, sprcial needs children are oftell
denied acti\-ities simple. because the\ arc labeled as
disabled, even though the parcllta think thrl are c;t
pahleofparticipating..Foresample. 011c mother shared
that her child leas not allo~~l to ride a horsr elan
though her husbantl ~vas planning to ride \cith the child
and take full responsibilit!. for the child's saf'et\.. The\-
urged that MY "put label\ on cans. not o11 children."

  Like delegates from other rrgions, thcw parents
said that, to ensure smooth transitions. they must be
good recordkeepers and make s~tw their children's
needs are communicated ~vhen records ;II-P transferred.
Because those needs are not alw+-s pal-t of' a11 official
record, parents must alert professionals to them. For
example, health care professionals 111a. be proficient at
doing C-tube-feedings. but a parent ma!`be the only one
to know that his or her child needs to he fed for 10
minutes, then rested for 10 minutes, before finishing
the feeding. Caregivers might know how to get a child
ready for bed, but parents know which children won't
go to sleep without their teddy bears in hand. At the
same time, caregivers need to communicate fully with
parents. These parents prefer honest answers to their
questions. They insisted that caregivers should "tell it
like it is" and not "beat around the bush," particularly
when the information concerns their children.

  The delegates agreed that a model program would
have a single point of entry even though a family might
need a dozen or more senices. The model program
would cover all needs and disabilities and be based on
the philosophy that the systems should adjust to the
needs of the farnil!,. There would be a single set of
paperwork for all senices and a resource cowdinator
assigned to each family to help the parents through the
bureaucratic maye. Pt-escreenillg of infAnts and (Aild
Find stwices should be made a\Glablc to all part'llt\.

They cited the Nebraska Family Policy Act, which coor-
dinatrsall set-\ices to need!-families, and recommended
t1lat.a national policy modeled after this act be devel-
oped. These delegates also expanded the idea ofparent
support groups and partnerships to include parent-to-
professional groups. professional-to-professional groups,
agency-to-agellc~ partnerships, colllnlullit?i-t~commu-
nit!. partnerships, and State-to-State partnerships.

  IGmsas model programs include Parents asTeach-
ers, Healthy Start, the ParentTraining and Information
(Ienter. and Keys for Networking, all in Topeka. In
Omaha, Nebraska, the First Step Infant Health Care
Prqject has prenatal programs and integrated services
for low-income mothers living in public housing. t`n-
der Missouri's First Steps program, resource coordina-
tors come to the home and explain available senices to
parents. In St. L>ouis, Missouri, the Human Develop-
ment Corporation, Parents as First Teachers, and the
Parent/Child Center were recommended. Missouri
and Nebraska each have information hotlines: III ,Mis-
souri the hotline is called Parent/Link. Kansas also has
a Resource and Referral System hotline. The Nebraska
Farnil!- Support Netlvork was cited as a model support
program.  Missouri's Parkway Ear-l!- Childhood Pro-
grams and Earlv Childhood Organization (ECHO) arr
successf1tl 1110drl p~-ogt~allls. Iowa has the Early (~hiltl-
hood Special Edttcation p~-og~~~t~~~. the Pat-etlt Itthttt
Surturitig (:cntcr. t]lts .\KP Respite (1;n.v Tl.;tining
I't.c!jr.ct. ;tiicl I'p \\`ith F,niiilic\.


Delegates from thesewestern States

COLORADO                          were concerned about the availabil-
                                     \'          --,--r-.7       -. it& quality, and cost of health care in
                                    `.       .!-cm --" ,\- Am
                    I yip-~!jyyz$    erica.
MONTANA                                     I         They pointed out that get-
                          ting families covered with health in-
                                       1'     . ".,r$$
                                                    _ -4
NORTH DAKOTA               -.       ~, ~--- surance is a need and a solution. They
                                                    __--,- ,
                                  4~ ,, . :  cautmned that health insurance should
                                                _ 5. Are 4
SOUTH DAKOTA `. . ,-     .-, not be confused with Medicaid, which is a
                     limited resource. In comparing .Medicaid

UTAH

with health insurance, they pointed out that health insur-
ante allows access to health care; Medicaid does not

WYOMING

gm-antee that access. Health insurance covers preventive
care; Medicaid does not. Going hand in hand bith the
probhn of health care costs is the concern that liability
has become a real problem in the United States. The
doctor's fear of being sued for damages is increasing costs
for parents and communities,

These more sparsely populared States have sev-
eral problems in making families aware ofservices and

at a Glance

enkxing their participa-
tion. Families livirlg in ru-
ral areas often have to relv
on word-of-mouth for in-
formation on available ser-
vrces: ~4 toll-free hotline
`muld be a useful solu-
tion+ Each State should

halk2 a free clinic system

     art from local businesses for programs such as chileare   With an interagency co-
t ~par-ticipatiotl
\i * Encotirage supp
:i * Extend programs su& as Girl Scouts and 4-H Clubs to a11 communities    ordinator to provide
and prhde funds for fa&ies who can't afford to Participate          Parents with informa-
;\ 2 I * involve parents in program design and planning
\I -k lndve prents in pg-qpms to visit new mothers and nerve a6 their     hn and help line up
                                           State Semites.

3s   mentors
i\$r Expand hosp ital funding to provide followup care                Region 8 dele-
                                gates also ttrged
ii
3%
I                                       greater invol\;ement
.; 2
L B
is
Transitions                           at the community and

: h c h hfarmahn from F~~ about mechm that migger certain
     6-p                          local level, not only
    h+ors in children
  ide uaining in Parent@ skills and IlUk~On as part Of ee basic    for individuals but

       -1 ...:,,;,.,l,,m   to conduct Parenting training and help      alsO for local busi-
                                                             _ ._
       dve Parenting vision ,              msses. They recom-

                    -- &^ kllrrrmp 2 nation of learners              mended that local

                                          that

         and local funds to supPo* P'ogrms
* Run programs as businesses are run, with measures to ensure
&j&yes are being carried out

their

business leaders


support childcare centers, for instance. They suggested
that community programs such as the Young Slen's Chris-
tian Association (YMCA), the Girl Scouts, and -l-H Clubs
be extended to all commuriities and that fLmds be pro-
vided to families who cannot afford these programs. The)
recommended that parents lobby within theircommuni-
ties to sensitize leaders to the importance of the farnil>- as
the basic building block of the communi?. They stressed
that parents should be involved in program design and
planning. An example of veteran parent involvement
would be to visit new mothers in the hospital and serve as
mentors. They also stated that hospitals need to allocate
funds for followup care.

  Like the parents from Region 7, the Region 8
parents said that it is their role to inform programs about
their children's particular behaviors and needs that might
not be part of an official record. These delegates talked
about the importance of informing new senice and care
providers, before the transition takes place, about trigger
mechanisms that evoke certain behaviors and ways the
parent has found to control behavioral problems. Tran-
sitions can be difficult and become a monumental hurdle
to a family's development. When a transition is made,
these delegates said, families need to celebrate their
mutual or individual achievement.

  The Region 8 delegates advocated that training in
parenting skills and proper nutrition should be pxt of'

the basic school curriculum. Furthermore, they main-
tained that parental edllcation is a role that religious
bodies should assume. Part of that education, regard-
less of its source, should be to help parents develop a
positive parentingvision. Itwould bewiseforeducators
to remember that not every parent's childhood lends
itself to such positive experiences and that not everyone
has an instinctive vision about parenting. This group
looked at education in America and declared that we

must become a nation of learners. Parents need to
redevelop their onm enthusiasm for learning if they are
going to create such an enthusiasm in their children.
The Region 8 delegates cited a neecl for more mingling
of Federal, State, and local funds to support programs.
The!, also added that programs should be run in a
manner similar to businesses, with measures to ensure
that those who use the programs are receiving the value
that they are intended to provide.

  Existing model programs they cited were Partners
in Leadership, Family Resource Centers, Effective Parents
Project, Parent Education and Assistance for Kids (PEAK)
Parent Center, the Disability Information and Referral
Senice (DIRS) Hotline, Connect, and El Groupa Vida in
Colorado; Ask A Nurse and First Steps in Montana; Track-
ing in North Dakota; and Baby Your Baby in Utah.


Region 9 and 10 delegates argtted
forcefully that health care and so-

ALASKA

AMERICAN SAMOA

ARIZONA

CALIFORNIA

GUAM

HAWAII

IDAHO

MARIANA ISLANDS

NEVADA

OREGON

I    WASHINGTON

     ,/,; is
    . -A.._   cial service systems should recog-
               ~
      ._..
      I,   Y ,"J
   <:-;,;i
  -`__ &,t - -2 nize and \,alue native language dif-
      i ---"-y;  ferences, local customs, and family
     _; .~r  i L'dllles. %,foSt systems shobv a marked
     .~. ---., _
     cultural insensitivitx. and fail to involve
     parents in decisions that affect their chil-
    dren. Social service workers need to be
mot-e compassionate, and the)- need to encourage the
growth ofcommunity-based programs. Eligibility crite-
ria need major overhauling. The criteria are based 0::
artificial standards (income levels versus need) and
lead to unfair labeling and inequities in services. Re-
gional cost of living differences are not taken into
account. They maintained that families rvho need the
sen.ices most often cannot participate.
Like parents in other reLgions, the.% delegates com-
plained about the lackofcoordination offsenices; duplication
of some senices co~h.Ses recipients and forces providers to
compete forfitnding while gaps exist in the provision ofothet
senices. Furthetmore, the)~n~aintined that the &shbtthon

of.Xnices around he countn
is ~llfAW1. Thev Aso voiced a
desire t(~ paticipate i]l tile de
`@* and planning for prcr
gl~mts,itlclttdingi~~~o]vement
`I1 cunictthtrn development,
hi"lg.~ldbttdgetdecisiot,s.
`At the same titne, parenh
IllUS ensure tha&-nice pre
\idersha~eafitllundentand-
ingof~eirchildren'sneeds,
They A0 tttaiIltiIled hat

tO family problems such as divorce, substance
or incarcet7ttiOn of a parent

sibility to be advocates, not
On&for tbeirchildren but
ais0 for the pt-oograms in
which

  they participate,
and to lobby for these



  the Far \$`est and


Pacific protectorates shared their concerns about the
overwhelming responsibilities of being parents. The)
said that parents need hope to get them through dail!.
living and especially in situations when transitions are
involved. To give families hope. Government agencies
and other service providers need to help them fulfill
basic needs, including those for housing. health rare.
and nutrition. These parents also noted the lack of
collaboration among agencies and the lack of consis-
tency across agencies, both of jvhich make transitions
more difficult. Thev cited a need for rtxferral pel-solar
lvithill agencies to help families deal \vith transition
issues. The Nation as a whole (especiall! all peoplr
caring for its children) needs to comprehend the ef-
fects of such family problems as broken honks and
substance abuse: special concerns of parents 1vli0 art`
incarcerated or unemploved need to be understood
and taken into consideration when transitions are
necessan.. Parents have a respoilsil~ilit~ to netrrork and
to be team players in helping to provide senices, par-
ticular-l!, during times of transition. Like the delegates

from other regions, this group maintained that parents
must maintain information about their children, and
the\, must prepare their children for transitions.

  A model program would allocate funds for parent
networks. especially among minority groups; involve
local media, churches, and other community organiza-
tions. including police, to disseminate information:
involve greater parent participation; reduce paperwork
for applicants: ensure that programs and senices are
better coordinated; and respond to information re-
quests in a timelv mamler. Examples of model pro-
grams cited b!, these delegates include the Murphy
School District in Phoenix,Arizona; California's Healthy
Start Support Senices for Children; Even Start in
Blackfoot, Idaho: the Slaternal and Child Health Pro-
gram. Handicapped (:hildren's Resource Center, and
Referral for Senices in the Mariana Islands; and the
\\`ashoe Pregnanq Center in Reno, Sevada.


Native American delegates iden-
.-

tified the search for information

:," - &-ki ,
  2,` ~ . .    - -.`1' . . ,
  *.  *+.:fg$y,-J;Y as their overriding issue. Parents I+<th
*. Y
I,". -w * -*-
:.+q: ."--.mm.        special needs children feel particu-
      c.f --~~
  .i*: *,        ,.- -'    I_.v "?"_
                       . . h  larly at a loss, and there are too few
                   d.
               i_me' i
                  . s--
      - .        programs for newborns. Social senice
        .j.  Tmd,-;e.----
                     *, i
              . _. *-'v-z--,.  systems in Oklahoma and Montana fai]
                   to
.-                        '2  provide Native American parents with

comprehensive information on available

services, and transportation to health care centers is a
serious problem in isolated areas. Supplemental foods
are also hard to obtain in these areas. Non-Native
American doctors and dentists often refuse to provide
services to Native Americans and those who do senre
Native Americans are concerned primarilpwith paying
off scholarships and show little compassion toward or
understanding of their patients. Housing, especialIF
housing provided 1~~ the Department of Housing and
Urban Development, is often inferior.

at a Glance

  These problems re-
suit in and are corn-
Pounded by Problems
such as a high rate ofsub-
Stance abuse among

n available services

                   .,
mothers, including paint

easier in idated areas
dentists who serve ~~~~~

    provided by the Department of Housing and Urban
* Improve housing
* improve the detection of substance abuse among mothers
* Provide sex educacon for teenagers and increase the number Of
mothers receiving prenatal care

and glue sniffing, which
often is Undiagnosed.
Teenage  Pregnancv
rates are also high, and
hhn parents seem to
haye difficulty commu-
nicating about sexwith
their YOUngsters. The
community's lack of
compassion for these

cifically for Kative American chi1dren

Young mothers lowers
their self-esteem. lzur-
thermore, they often
don't realize the

ng a national database for socia1 _.    need for prenatal
                     care and don't know

hO~~ to adequately
care for their babies.


As a result, many Indians begin life at risk and remain
so all their lives.

  Native Americans feel that funds to combat these
problems are allocated on the basis of head counts
alone and that senices are uneven and often discrimi-
nating. More funding \vas a universal recommenda-
tion. The Native American delegates added that some
funds need to be clearly targeted for Indian children so
that all their children's needs can be met, regardless of
family income or tribal programs. As the 1990 census
indicates, more than 60 percent of Indians live off the
reservations in both urban and rural areas. In urban
areas, the Indian communit\. is culturally diverse, sonte-
timesrepresenting several tribesand languages. Provicl-
ers need to be aware of this cultural diversity, and
services should be provided in these urban areas. One
dglegate told about being denied special health services
because a provider insisted that she use the resewation
hospital, which did not offer e\y-thing her condition
required. Another delegate told of a person who had
facial characteristics of an Indian but did not have a
tribal heritage; nevertheless. he Ivas sent to the resel?a-
tion for senices.

  Indian delegates reminded their white and .%fri-
can-American colleagues that, as Native American par-
ents participate in programs, acting assertively to con-
front the system and demand that it become responsive
defies tribal heritage and culture. Native American
parents will not be assertive merelv because someone
tells them that they must. Howe\,er, this problem can
be resolved if Native American parents accept the role
of teachers for practitioners who don't understand
tribal customs and history. It is imperati1.e that senice
providers be taught that it is contrary to tribal culture
for a person to look directly into another's eyes lvhen
he or she speaks because social sen-ice providers have
been known to doubt a person's honesty because he or
she did not maintain eye contact with the practitioner
and deny benefits. Other unique comln~micatioii
barriers include the loss of information OI- misunder-
standing during translation, especially when all words
in tribal languages do not have an English rqui\alrllt,
orviceversa. Programsand the materials the! IIW nwtl

to be tied to cultural relevancy both for children and
parents.

  Although confidentiality in health and social ser-
Lice programs is a concern for all parents, it is particu-
larly important for Native Americans. Confidentiality is
sometimes threatened when the programs are adminis-
tered by the tribe because the providers and recipients
of services are often acquainted or even related. Hold-
ing tribal staff accountable is very difficult. Neverthe-
less, these delegates. like their colleagues in all the
other regions, said a national database network for
social senices is needed; however, they advised that
regulations ensure confidentiality among all senices
and programs.

  In another area, senices and programs must rec-
ognize the distinct status of tribes as separate nations.
The delegates said that professionals need to be aware
of and address issues of racism, and the system needs to
begin to see Indian parents as prime educators, espe-
cially educators of cultural heritage. Practitioners and
professionals tend to show little respect for the use of
elders for teaching tribal nations, they added.

   Head Start and !%TC are considered model Fed-
eral programs. Newer programs that seem to be work-
ing well include Wisconsin Indian Network Genetic
Senices (WINGS) (in Wisconsin and Oklahoma), which
identifies special needs children and helps coordinate
senices for them; the Trails program, an Ouhvard
Bound program; National Indian Youth Leadership, a
New Mexico modelforyouth leadership and mentoring;
and Indian Child Welfare programs, aimed at keeping
Indian foster care and adopted children in Indian
families. The HomeBound and Babies Having Babies
programs in Oneida, Wisconsin, both serve teenage
mothers. Oklahoma has excellent referral centers in
the Tulsa Indian Health Care Resource Center and the
Oklahoma City Indian Health Clinic. The Pawnee
Benefits Program issues benefit cards that can be used
for care by a printe physician.


Migrant families also have their

own special set of issues of con-
tern, Gth housing, salaries, health
insurance, and injured workers hen-
efits taking the lead. Migrants often

      t1111st relv 011 crew leaders who recruit
     teams of workers and then may exploit
    them, denying them basic rights (such as
    forcing them to work on Sunday when
they jvant to attend church) and charging them for free
services (such as housing provided by the farm owners).
hfigrants Ivere largely overlooked in the 1990 census,
and the low level of available health care and social
senices reflects this deficit. The lack of coordination
between programs from State to State affects Migrants
particularly: They cannot qual@forM?C, Food Stamps,
or Medicaid benefits in one State without caI~ce]ing
their benefits in another. If thev return to a State, the\
have to reappl!~. Migrant parents need some kind of

- resource material, available
          .rn_..^ .L-. I.

I   reness and Entv                       and

     nrnw= housing conditions, salaries, acceSS to health insurance, I sh~~dd he coordinated!vith
                                  the needs of Migrants in

r--.--~ KLXLLII w1111 a >(a[e s
reguiations and policies,
Federal programs also

1 f  inj&ed workers benefits.
5 i * Provide controls over mistreatment oy `1
f Increase available health care and social se1 VKCJ
ii * hcreae coordination of ser\`ke~ among State a
$1 i $* provide resource materi& on each Stat{." nrnCT'
I\ * Provide funding for support groups
i bak-ticipation
I e * Provide conveniently located facilities
! I* Address transportation problems

H .I:,.,,.. 4 -.  ' We, and

I L.S. D epartments of
Health and Human Ser-


"migrallt" differently,

7 I! * Examine poli$=s and impkmentdon of food stamp aflomion           leads to confLlsion

i! * Make Food Stamps available for distribution through the Post Office
\ ' * Address communication Problems by proG&mg more bhgd staff
;!, * Enforce child labor laws and keep children in school
$I* Provide daycare services
:a

and causes denial ofben-

for Lvigrant families

jbransitions             -J Actor ,,,h?mtcmc 70 h&
ii * prov& improved access to pro@
:I
$1 migrant families preparc r~ ~- &-^
18 * Make tra&r of s&oO~ CredlB U~l~r*l
                '
Ii * Improve sensitivltJ I to migrant f;.-"ip"
                    1"`1"~.3 p robleGs and show respect
1 i * Hold a followup conference

   igrant lvorkers
who do participate in
programs find that
the!; often must travel
long distances to ob-

tain sen-ices and miss


lvhole days of work. Transportation is often hard to
obtain. Crew leaders often do not allow parents time off
to attend meetings. Migrants are often subjected to
illegal treatment regarding Food Stamps allocation.
One delegate recommended that Food Stamp distribu-
tion be alphabetized for pickup at post offices, so that
recipients do not have to spend hours lvaiting in line.
Communication is often a problem for Migrants hc-
cause senice providers lack enough bilingual staff` or
have no one who can speak the client`s language.

  Keeping Migrant children in school is a pressing
issue. Child labor laws are not enforced: children as
voung as 10 or 11 years are hired to work in the fields.
Parents often have no recourse but to havr their chil-
dren work; their family's livelihood depends on theit
halTesting as much as possible, and each pair of hands
adds to their production. This problem is compounded
by the lack of daycare for Al&ant families. The result
isthat small children are brought to the fields along side
working mothers, or they are left in the care of children
who are too young to work, and It-ho are not much oldei
than their charges.

  Migrant families, their conference representa-
tives pointed out, face transitions that are a!most ahva1.s
double-edged; they. are geographic as well as develop-
mental. Migrant families are constantly making transi-
tions and that means new rules and new ernironments
for their children without any mechanisms to prepare
for the adjustment. This continuolls movement means
continually losing friends and family support.-

  This delegation commented that it is particularI>
important for their parents to he guardians ofchildren's
records. It is common for Migrant families to complete
and file all the paperwork necessan to receive public
assistance, only to have the growing season change and
force a move to another State before the assistance
starts. M'hen they get to the new State, they added, the
paperwork has to be redone. But guarding the records
does not always guarantee that they lvill be transferred
easily or correctly. These delegates said school credits
do not transfer from State to State Ve1-v easill- or un-
formly, especially when students enroll in a nc'\v scl~ool
in the middle ofa term. Migrant parents ~-c~co~~~nl~nd~~l

that the U.S. Department of Education devise a system
that allows classes and credits- to transfer from other
States. These delegates also called for improved access
to routine programsasaway tomake transitionssmooth.
The!- said that bad health conditions and no daycare,
after-school care, or social semices are the norm for
communities lvhere Migrant workers live. They urged
tha.t employers of Migrant tvorkers be closely moni-
tored regarding their employment practices, facilities,
and use of pesticides.

  For .\ligrant parents, developing children's self-
esteem often entails demanding respect for Migrant
families in general from teachers and other caregivers
or sell-ice providers. They complimented the confer-
ence cosponsors for including Migrant issues on the
agenda. sa!ing that more of these opportunities are
needed. They urged the continued participation of
\Iigrant families so that they can be partners in raising
healthy children ready to learn.

  The families agreed that a model program should
include classes in prenatal care, dental care, and En-
glish as a second language; make Head Start available
for all Migrant children; involve parents in policy deci-
sions; bring mobile health clinics to rural areas; fund
senior centers for care for the elderly; and sensitize
social sewice staffers to the special needs and cultural
differences of Migrant workers. Migrant families are
subjected to exceptional stresses and strains, and model
programs should take care to address the needs of the
family as a whole, to help maintain family integrity.

  Among existing model programs, Washington
State has a Migrant Council that works with the whole
family; the East Coast Migrant Head Start provides
continuitv of sewices; and overall, Head Start is an
effective program because it is designed to seme the
family as a unit.


4

Presentation

of Findings


Chapter 4

0 ii the final tlw of the (:onf~rencc, the mort
    than iO0 participants came together to hear the
    findings of the Parrnr L2'w.k (;roups. Thr fincl-

ings were presented I~\, three parelIt rcpresentati\~es, ant'
for each of the topics discussed: a\varrness of and entn
into health, education, and social srn-ice sytcms: partici-
pation in the systems; and transitions fi-om one program
to another within the systems. The parents prepared their
presentations of the findings by working with the Ivork
group facilitators, recorders, and rapporteurs to deter-
mine a national consensus based upon the thorough
it-ritten notes of the work group sessions. After the parent
representatives presented the findings, the issues theI.
raised were addressed 11~ the Responder Panel, composed
of directors of key Go\.ernment agencies that pro\icle
services to families. This dual panel composed of the
Parent Representatives and the Rry~onder Panel ~vx
moderated b~RearXclmiral~]ulia Plotnick. (:hirf`Surse of
the U.S. Public Health %-\-ice.

Awareness of cm02 EntrJ into He&h,
Education, and Serial Service S\;stem

Hi. She [Rear Admiral Plotnick] told \OII I`m from
Clinton count?. I liw in a VCI>. rural part of Xl-kansas,
and so that's the background I come f~rom. I have t\vo
children. I have a l+.ear-old who is normal, hralth!-.
and looks like she's 1X. and an X-year-old who has spina
b&da, a neuralgenic bladder, severely dislocated hips,
club feet, hydrocephalus, and growth hormone defi-
cienc!. and tvho must take injections daih..

  I'm a mllltidegreed individual, and I think I'm
\\~a11 educatul. bllt I have to tell \oiI that rwtkiugin ni)
lifl prepared my fix being the parent of a special needs
child. But then. nothing prepared me for being the
parwt of`;1 tanager. either. So,!x)u knoiv, youjust have
to Iwrn as 1011 go.

  \I\- X-war-old daughter. \\ho has spina hifida, has
      
txwl inwlvcd in programs like Head Start, \vhich \vas a
blesillg to nn f':miil\,.  I'rvxwtl~- she is on TEFRA,'
\vhich. as m;un~ of \`OII ma\. knolv, is the Katie Beckett
           
uai\x*r. and. again. that's been a Godsend to rnr. f:,lniilv.
  It can he \rl?' frustrating Iv-hen you are lvorking
imtl ti3ing to do good for \vitr famih~, and just because

68  Parents Speak Out for America'~ Children


you are lvorking and tying to do good, \-oil don't ha1.e
any more ofan idea whew to go for sellices than people
who aren't working and \vell educated. I mean. .just
because ~OLI have a college degree. doesn't giw you an!-
great insight into how to deal uith children. That's,just
something u'e all ha1.e to learn.

  It's my task today to summarize to !VU the wports
fl-om the groups on a\varene~~ and elltr\. and 1 \\-ish to
let ~OLI knon- that I am speaking to !ou in a collaborati\~
wice, and not as a singlr illdi\iclual.

The Parents' Roles and Responsibilities

The groups felt that the parents sho~~ld first btw)mc
inf'c~rmrd abotit their olvn cllildrc11'5 needs, ant1 that
they need to he informrd about 1\4~at wr\-ict+ :IIN'
available. It's ~el~ important to remember that I\noul-
eclge is polver. A1nd \ve n~td to kncnv \vllat 0111 right4 a\
parents are.

  Parents should be thril- childrt3l's adw~catr~s;. and
in order to do this, theI mllst first haw a belict in
themseh~es. They've got to be ably to newt their ow11
needs in order to be equal partIlers with p~~olC~ssio~~al~
and sewice providers.  Parents sliould nct\\.oi-k Gth
other parents because there is great strength in num-
bus, but NY have to keep in mind that net\~orking can
be just one person Ivith allother l~~w~n.

Issues of Concern

There's just too much red tape and paperu,ork in
systems that a;.e not people oriented. It's ye17 diflicult
to get into the systems, and once IULI get in. VOII don't
want to stay. An example of this is problems lvith the
Medicaid program. Medicaid sa!`s that they will pa!' for
senices for children who are indicated b!. screenings.
hut they are un~villing to pay pro\idrrs eno~~gh mane!
to make it worth their while. And the end result is the
same: the child still gets no sellices.

  The system is not set up to meet thr needs of
people whose first language is not English and who ha1.e
a different culture. Their hours are inflexible fi)r
working people. If \.ou'w got a <)-to-S.job, a lot of times
You can't take off \\,ork to get VOLII' child's inimuni/a-
tions \+.ithout rndangrrillg \.otII` 01~11 job. That's ;I

problem. There are bat-l-iers for physically impaired
people. There's a lack of transportation to providers,
especially in remote rural areas. There is no account-
abilit!. in the system, ancl if'you have a problem, there is
often no one to ~vhoni ~011 can complain.
  Our s!.stem fosters dependency. Generations are
growing alp on a lvelfare svstem. and it's becoming the
oiih \~a\' of life that they know. In some cases, single
parclits making minimum Irage cannot afford private
llc.alth instu-anre to coyer their children. =\nd thus, in
n1;u1~~ USC\. it's easier to he dependent on the system
than it is to get a~job. 1l'elfAre programs, such as AFDC,
cause f;unilies problems; families are unable to get
a\sistancc* a lot of timrs unless the father is willing to
lea\ e the honle. thus bre;Aing up the family.
  Thtw artw't rnough tas dollars to go around.
T~~cw art.n't ~n0~1g1~ ri01lu1:~ to go around. <kmm~uni~
p~~ograms are forced to compete for the same fbnds.
This sitllation brrahs up the communi~.

Solutions

Sow \t.c get tlo~w to the meat of the problem, the re'ason
u.c came. \Vr feel that there should be school programs,
starting in kindergarten and going through 12th grade,
that de\,elop social competencies, to prepare children on
how to be effective parents and advocates for their own
chilclren later on in life. Tlleycould learn selfesteem, self-
confidence, problemsohing, decisionmaking, and how to
get along with others.

  FV\`e need to build support networks within the
commL~nit).-\hate\`er that community may be for you,
ifit's~ourneighborhood.~ourworkplace,etc. It maybe
people \vho hal-e similar health concerns, or it might be
vour tribe.

  There should be directories of resources avail-
able, locally, statewide, and nationally, with toll-free
~lmnhers for resource information. And there should
he one-stop shopping for all mandated programs, such
as Lledicaid. M'IC, or Food Stamps. .Xnd this should
begin Nit11 a single application form, or as some people


J -.
-_

"And now we Ichafge you, our
Government, t6 rep&t back to us,
            ._ ., ~-. _ _ _
& :&`h&; we want &-:-&L&, $&
are )rd-u,going to do wi& this
informati&& How will -& be used?
              c

When are y@ going to te-fl us? How

prenatal care for evervone. We need earlv intet7ention.
Public Law 99-457 is aimed at children 0 to 2 years of
age. We need to target new parents. M'e need Head
Start for children ages 3 to 5. Those arejust some of'the
programs we felt had worked.

  Parents should have a ~a!- of talking back to the
system. Parents need a common ground with agencies,
a respectful partnership that recognizes each other's
needs. This relationship is goin, v to foster and encour-
age easy entry into the s!.stem. Parents tired to build a
method to evaluate the senices they receive and hold
semice agencies accountable for the quality. There
should be persons designated to respond to all com-
plaints in a timely manner.

  Children are our greatest natural resource and
our future. There should be an all-out media campaign
just as intense as the one for anti-smoking and AIDS
awareness. It speaks very poorly of our counts that \ve
had laws to protect animals before we had laws to
protect children.

  We need to define our national health care system.
This country needs to make up its mind. Is health care
a right, or is it a privilege? Is insurance a right, or is that
a privilege? There's a parent here at this conference

today \vho is pa!ing insurance premiums of $1,000 a
month. How? That's $12,000 dollars a year! How many
families can afford that?

  In closing, lve've been asked to report to you, our
Government, on everything that we've done in the last
few days. And now we charge you, our Government, to
report back to us, the parents. We want to know, what
are you going to do with this information? How will it
be used? When are you going to tell us? How are you
going to tell us? And what if we don't like it?

Participation in Health, Education,
and Social Service Systems

Ellie Valdez-Honeyman
Pm-m~ Lklrgclt~frorn Colorado

I'm from Region 8 and the beautiful and mountain state
of Colorado. I leas born in the southern part of the state
in a place called El Valle San Luis. It was there that I
learned to speak Spanish with my grandparents, who
\vere very special to me.

  My husband. Mike, and I have six children. The!
range in age from 2 1 vears- and I know1 don't look that

old, but I am-do\vn to 20 months old. We have three
girls and three boys, and three of our children have
disabilities. CurrentI!.. our home is also blessed with the
presence of two grandparents, who are there for an
extended stay. T1t.o of our children with special needs
are attending their home schools with support from
special education. Our s-year-old and our 20-month-
old attend an integrated daycare program at a wonder-
ful place in Denver. which has been our family's Point
of Light, called Laraden. There, our daughter Jamie,
who's 20 months old, also receives her therapeutic

intewention.

  M'e're a complicated family, and we have some
fairly complicated needs. W'e've had to challenge the
system at all levels to get what we needed for our
children. But right now I'm not here for them, and I'm
not here for myself, or for my State, but I'm here to
speak for parents all across our country who are repre-
sented by all of us at this conference. Every work group

70 Parents Speak Out for America's Children


addressed the areas of awareness. participation, and
transition. And I'm going to try to speak about our
collective thoughts on participation. I took the liberty
and came up with a definition that I hope sa\-s what you
thought participation means. Participation is being an
integral and meaningful part of whatever it is that we
need to be healthv families read\ to live and learn.

  In participating as families, we all identified some
responsibilities and roles that \ve have. M'e need to
provide for the needs of our children. That meaIls
giving them those things that can be seen and touched,
like food, clothing, safety, health care, and qualit!. time,
which will in turn manifest itself in good self-esteem.
confidence, or as one II~III from the southeast said,
[so] "They'll be emotionally and socialh~straight." After
those immediate needs are met, we need to instill in
them a spirituality that encourages values. morals. and
respect for themselves and for others.

   We need to be advocates. M'e need to be advocates

for our children. M'e must get their needs met first, and
after \ve do that, we can become advocates for other
`amities who arejust starting out, or who are stuck. ;\nd
finally, we can advocate for the system components that

work for us. We need to develop partnerships with
systems. We must become partners with the systems,
and becoming partners means there's an equal status
and respect of input, as well as capability.

  Parent to parent-that can mean a lot of things.
But, parents, I suggest that we need each other. No
matter whether we're a stepparent, foster parent, single
parent, birth parent, adoptive parent. grandparent-
we need each other. And we can help each other by
supporting, mentoring, role modeling, orwhatever it is
that links us together. We need each other.

  M'e're responsible for community education. We
must become involved in our communities, because by
our presence, we'll educate about the benefits of integra-
tion and inclusion and we'll get beyond just cultural
alvareness and cultural sensitivity. We'll all become cul-
turally competent. In other words, we won't just serve
tortillas and peanut butter around Cinco de Mayo, but
we'll have all our forms aKtilable in the languages that the
people speak. \Ve'll understand that when a Native
American mom doesn't make eye contact, it's out of
respect, not disrespect. We can go on and on about those
areas of competency and what that means.

  Regarding these parents' roles, we identified some
issues of concern. There were many, but the ones that
came through loud and clear were the stigma of receiv-
ing services, the stigma around being poor, a circum-
stance over which babies have no control. One of us
here identified "a national psychology" that stigmatizes
you if you are a recipient of certain Government ben-
efits. One mom described her embarrassment at the

checkout when she overheard someone make a com-
ment about her purchase of cookies with her Food
Stamps. She was almost in tears when she said, "Doesn't
every child deseme a cookie now and then?"

  Ironically, we have families who can't get those
benefits, because they make a few dollars over the
maximum. A parent from New Hampshire says she
can't afford to get ajob, because she'll lose income and
her health care. Eligibility is the barrier. Eligibility for
senices should not be just income-based. ive call't
forget thosta families lvho slloilld be ~li~<il~l<~ I)(`( ;1~1'('
tlIe\- h;rye cl~i1dl~~n nith (,\`~l-\\l~rllllit~~ II~YY~Y


  There were lots of bar&l-s to participation in
senices, programs, and support, But some of the ones
that kept getting mentioned were language, and not
just non-English, but language full of complexity and
-jargon. "System language" that only a bureaucrat can
understand, and that the sometimes can't e\`en tranh-
late, is also a barrier.

  Transportation is a barrier in rural areas. There
aren't enough senices, and sometimes you have to
travel far to get what you need. 111 large urban areas.
lack of public transportation can keep you alray too.

  Inflexibilitv is also a barrier. U'e need flexibilit!
from our employers to get to the senices. M'e need
senices to be available at flexible hours and in flexible
places. Families need to be able to identi+ \\-ho their
community and family are. A big barrier sometimes
develops when the systems try to define family and
conimu~iity.

  Bureaucracy is complexity, and often the hureau-
crats don't understand the system. Paperwork is com-
plicated. One mom in the northeast told us ho\\- she
was eligible for Medicaid and she had her card, but she
couldn't find a doctor who lvould see her. Doctors are
often 1ee~ofMediraid patients. notjust because ofthe
low reimbursement rate, but because of the papel~~rk
and the time involved in getting their monev.

  Being the proactive and sensible people that \ve
parents are, we identified some sohttions, and lvc put
them into tlvo categories.  The first one \vas local

initiatives. We identified that we need flexihilitl- in
service deliveT. X variety of hours and da!.s when the
services are available would reall!, help us. Our provid-
ers need flex time, if necessay. Our moms and dads
who work need support after 3:OO p.m. and sometimes
on weekends. We need consistency in funding. M'e
want to be sure that the services that we need will be

there tomorrow. Locally based selTices and support
need to be available and close to home. We want our
children with disabilities to go to school with their
brothers and sisters and neighbors. `Ilie want all chil-
dren to get a fair shot at education, not based on the
income---or lack of it-of their parents. We have to
foster self-esteem. The senices, supports, and benefits





  :

"If agencies work better toget&?. . .,
then m$be fewer of us -&Gld be-
                            ,. -,-
come casu&ies of that common ac-
cident called `falling th$Fugh the
cracks."' :-  _-. `. _. -;..

                              -_

                                 . .

should be viewed in ways that are meant to help families
to become enabled and in which empowerment is
facilitated. We all have the potential for empower-
ment. More support should go to programs that make
families rejoice in the success of being self-sufficient.

  As parents, we accept some responsibility. N'e
think that all parents haIre to be involved, as budget
planners, policymakers, and partners in decisionmak-
ing. M'e sawinteragencycollaboration asa key solution.
Good senices jvill result from good interagency collab-
oration, and once again, the collaboration should in-
clude parents-not as tokens but as real participants,
who are respected and maybe even paid for their
expertise. If agencies work better together (or, as a
bureaucrat friend of mine from Denver said, "smarter,
not harder"), then maybe fewer of us would become
casualties of that common accident called "falling
through the cracks."

  The second category is Federal initiatives. Our
compafieros in Region 2 actually put together an initia-
tive for a partnership across all Federal agencies that
would include families and agencies from local levels.
This partnership would be a formal structure that
would create a standard in which senice systems wel-
come and embrace families and use proven models
that work, such as Head Start. The principles outlined
in the plan would be embodied in the design, delivery,

72  Parents Speak Out for America's Children


and evaluation of set-\ices. The philosoph!~ mu41 in-
clude familvcentered. comprehensive. and accotmt-
able setTice and support. And again parcn~s tntt\t lx
included as equal partners.

  Dr. No~ello. !YN~ issued IIS a challe~tgr \\+t~t \\t
ca111r lltw, ant1 VOll'\.t` alr~~ild\ llcal-d ant cllaw~~.
\Ve't-e issuing attothet- one. \vr a\ ]xll-mI\ \Y)tcYl ta\t
night, and we decided that. from \Z.;tAittg1ott. \OII
should lead that initiative.

  I ~vatit to thank Rosa Palaciotts. 2 pawn1 \vlio
supported me last iii<ght throy$i the long pi~oces5 of
putting all thew collwti\.e thought5 togvtlitt-. atttl I jit\l
l\xnt to share uith FUII ~otnething that I l~~arnc~l at this
conference. 1 sii\v. and I sec. a rral brattt~~iti the tli\-t4~\
here, and ~vc need to celebrate it1 that divctGt\. I al\o
felt a power iii collecti\wit3s. and 1 think uc ticctl to
harness this collecti\.e poww. \\.c need 10 idetiril\ 1lto\t*
areas that are important to all of us. such as I'~miil~.
health care, and education, and MY ttwtl to rtnitc a4
parents-all kinds of parents--to makr ottt- fitmilies
healthier and happier. to make health cart' accc-ssible.
and to make education more that1 just an academic
experience. but an experience in living. To do this 1
srtggest the leadership must come from all of` us.

Transitions Through Health, Education,
and Social Service Systems

Larry Bell
Pawnt Dpl~g~tef,-omDukc7oc1rr

Being up here makes me preetty nemous, especially in
following these very competent young ladies who went
before me. I want to take this time to thank Dr. No~ello,
and all the parents that were here, and all those people
that kept me up all night last night tt?ing to put this
together. ,%nd especially for the parents that wet-r in
Region 3, which is the group that I wxs in, for their
support. It is an honor to have been chosen to stand and
represent VOU.

  I 1~~s M-siting. and I saw my wife come itt-are \`ou
here. somewhere? Yes, okay, I feel better no\v. The! \verc
calling me this morning ~vondering \\lttw I ux. and 1

came dowtt, and I had all these people (I guess sectwit)
people) lvith \ralkir-talkies calling and yelling, "They're
coming through." It made me feel good as an African-
American male to have all that securi~ and not be on my
\\-a\ 10 jail.
  
   11~ name is 1.x11 Br~ll. and I'm from Delaware. I

Iia\~ ti\.e children and three grandctiildren. I'm a
second-geltrt-ation Head Stat-t parent. I ~vas involved
\vith Head Start ~vhetl my chilclren were in Head Start,
and now I ha\ c cttstod\, of one of my gt-andchildren
~vlto`sin\x~lved in Head Stat-t, and that's how I ended up
being in\ul\-ed in this process toda)..

  The purposr of m\ presentation is to britlg to-
gcthcr all of the \vot-k that the parents have pu in so
dilig~ntl~~ owr rltew past 3 da\-s and talk about issues of
;t~~ar~t~t~~x, lxtrcicipation. nnd transition. ,bd my topic
i4 going I0 t,c tt-ansitioti.

  First. 1 bxttt to share 2 little sty.. I heard a minister
fiicttd of'mine-and by thclvay, I fix-got to tell people that
1 uxs a minister and was going to be passing the collection
plate in a few minutes-I heard a minister friend tell a
stotT of` how e1.et-v time he went home and the\- sat down
to dinner, th~!~alwa!~s had squash. He hates squash. Eve"'


time thev passed the food around. \v.hrn it came to him.
he would pass it on to the next person. and his mothet
\vould say, "Boy, what's wrong with vou? You know vou
don't pass food without taking some and putting on it
yur plate!" He would say, "But Mom. I hate squash!" She
would take the squash and proceed to put more on his
plate than he would have if he had done it himself He
~vortld say, "But Mom. whv are IQLI making me eat this? I
                   I
hate squash." (And he's a gro\vn man.) .%rd his mother
would reply, "Because it's good for you." The point is this:
the information that we as parents are presenting to you,
especially the legislators, is the truth. Some of that truth
that ~011 hear will be "squash truth." It will be truth that
you may not like to hear; it may not feel good, but it \vill
be good for you. And throughout my topic here, \v.e'll he
co\ering the issues and roles and responsibilities of par-
ents; we'll be dealing lvith the problems, issues, and
concerns as well as sol~itioiis. And I kind of combined
them together.

  The thing that I want to leave and impress on all
of LIS before we leave here is that all of us have a
responsibili~when this Conference is or'er. People are
asking, What's going to happen lvith the information?
Is this just to be another time that Jve come together
and share information and nothing happens\vith it?" It
might be. but knowing from what I've seen. the time
that I spent with and around Dr. Sovello, I don't
believe that's going to be the case.

  But all of IIS, when it comes to working with
problems, solutions, and transitions, have a responsi-
bilitywhenwe leave here to go back to our communities
and meet with various agency officials to begin to talk,
share ideas, and discuss the roles of parents and the
roles of people involved in the system. M'e all have a
responsibility when it comes to the transition of OLU-
children. Our charge to our parent delegates is to go
back to ~OLH- communities and meet\vith the officials of
whatever system or systems that affect or impact on your
children. Sit down and define those roles.

  M'hen we talked about transition, we came up with
nine major issues. And the first one is that parents need
to participate in the transitional process. Parents need to
be aware of their children's needs, including health

ntwls attd specLt1 equipment needs. Thev should bc
encouraged to articulate those needs to the slxtems in
which the!,will be involved. Parents need to be prepared
for and about the transitional process. But we need to
remember that transition reallv begins with the transition
of the parent, to prepare children for the transition-to
do things like introducing them to new people, taking
them on a tout-of the school, finding out the daily routine,
and talking to out-children about that process. To prepare
our children for transitions such as ha\ing their parents at
these conferences that involve their children, people need
to talk with their kids about the change as soon as the)
know that it's going to happen.

  M'e also decided that it would be very helpful to
de\.elop a resource manual, information that would be
al-ailable and accessible to the parents so that, ivhen the\,
move through different systems, they would have a
source with the names and numbersand contact people.
Then. \vhen other needs arise in the future, thev lvill
have something in their hands so that they can contact
somebody to have those needs addressed.

  M'e felt that parents also should be encouraged to
be good recordkeepers, to have copies of all their
children's records so that as thev moi'e through the
transitions. if the s\-stem fails to make sure that informa-
tion gets moved on or passed on to the next srstem. the
parents at least have a cop!' of that information to make
sure that it gets passed on.

  \Ve thouglit that parents needed to detnand re-
spect for themselves and for their children and that the
systems that they're invol\ecl in need to respect them
and recognize that parents are professionals too. M'e
felt that one of the other things that would help in the
transitional process is for the systems and the parents to
sit down together and share and clarif\ their roles in
Ivho's going to be responsible for what.

  \Ve also need to improve communication between
systems. Impro\Glg communications would make for
smoother transitions; it would help decrease turf wars,
avoid duplication of services, and help to promote the
continuitv of sewices.

  M'e felt that program materials need to be \vritten
in the language of the parents, to take into consideration

74 Parents Speak Out for America's Children


the languages of non-English-speaking people. Also.
we suggest using picture books for those parents who
might be illiterate and being sensitive to language that
doesn't always translate exactly into English. Man!. of
theNativeAmerican termsdon'talwa~scompar-e\~hen
they are translated, andwe need to be sensitil-e to those
kinds of things.

  Successful transition depends on having eve~~\~ne
involved to learn to trust each other and the svstems that
impact upon their livesand the lives oftheir children. MP
want you to know that this takes work on both parts to
develop that kind of trust. M'e want a system that ~ve're
involved with to avoid technical.jargon and using terms
that we don't understand. M71en VOLI sit down to \vork
with parents to develop an IEP, make sure that \~m speak
in terms that the parents understand, and make ~rure that
the parents are aware that they don't ha1.e to sign an IEP
if they disagree with it.

  Another area of concern was that programs and
staff must be culturally sensitive and relevant. Svstems
need to see parents as the prime educator-s of their

children and especially educators of their own cultural
heritage. Programs need to be aware of and address
issues of racism that occur during transition-or an);
time that it surfaces directly or indirectly. Remember
thatthe sensitivity in thisareagoesbeyondjustethnicity,
hut also should take into account social and financial
status and spirituality issues. Remember to label cans,
and not kids.

  Also, \ve must focus and work on developing pa-
rental and child self-esteem. We want to focus on the
children, but when you're working with the children,
remember that parents need self-esteem too, and those
issues need to be addressed. Parents must be good role
models for their children and be good role models
throughout the transitional process. Sometimes this
means finding a good role model for the parent.

  One of the responsibilities of parents is to love
their children. but we know that before ~OLI can love
other people you first har,e to love yourself. Parents
must learn to be able to feel good about themselves
before the!; can help their children feel good about


~h~msrlw~. \Vc bxn1 to mthc sure their ciiiltlrt~li kuou
that rhcir fwliligs alx)ut thr transitional procc51 al-t
i111p0rtant and 1hat thr\ should he ellcoul~a<grtl to 5ha1-r
or to tyrcss tllore f'celillgs.  ivr sllo~lltl 1nahe a11
attempt to bo1xtr.r cl~ildrclls' wlf-e5teelll so t11;\1 the\
I\.on't be af'i-aid to speak up.  At the saiii~ time. \\c
shoulc] bolster pal-t~nts' self-rsteen1 so tl1u. \\.oll`t Iw
afraid to sprak 11p. so thal the\. \von't be afl2itl of tht
wstems that impact Ilpoii thrm and jvill be able to
confront the svsteni. Somr of the pawIlt Ad that
othei- pai-ents \t.on`t speak up ti)r fear that if' the!- do.
they may get involved in a sytem that ma! old up
iilvesrigating them or even make an attelllpt to rake
their children. Because of thaw kinds of' fears. some-
times they are ~uncomfortahle confronting the \wtem.
Rut \ve 11eed to encourage parent\ to stand up alltl be
the prima? ad\.ocates for their children.

  ;\iiother concern ~v;Ls that parental iii\-olvvinviit
must be consistent across sy-stem\. Slanr- titnt3 part~l~t5
\vho are in\otved in the Head Stai-t p~.ogram arc cotI-
rtantlv involved in the progress of their chiltll-rn: ttlt>I-
~~olunterr in the classrooiil. the\ spvlld timt'\vith ttlcnl.
etc.Then,lvhen thr~~n~o\~eorentrrotl~r~~~~s;tt.m~ortl~t
schoolsvstem, they're not that in!ol\etl. \Vc Itit*] Ihat \\c'
need to keep the parents invohwl and kwp that in-
votwme~it as the!- make tra~lsitions throtlghout the
systems so that our children can be health\ and read\-
to lear11.

  IVe also felt that parents should be in\ohwl in
program design and the policl~inakillg decisions that
  L
affect and impact upon their children. One suggestion
is that NY form parent boards. which arc ven. pre\Aellt
in Hcaci Start but do not exist in man\' other systems.
Mter the transition occurs. parents need to continue to
be involved. For example, parents that are involved in
Head Start need to stay involved as their children grow
and 111ove through other programs.

  Parents need to form their own support groups.
M'hen they do, programs should work with them. In
other words. Fvhen a parent group forms a support
gro~~p to help themselves and to help other parents
l\.ork through the transitional process, the programs
and systems should be there for them. to support them,

help thtw lea~-~l thr tl-ansitional process, and provide
niatcrialsor \\,hatevrr thev need to make that transition
a'r 5niooth as possible.

  Program c-ounwlors should be appointed to help
]xl1-cnta pw]x"- for tl1 e transition. Also, parents need
to be ;ntare of'llot onlv the needs of their own children,
lxlt the iiceds of others-to move away from, "me, ni!
four. and no more."

  (:onsi\ttwc!. is the key to successful transitions.
\\`r nrrd to he aware of the impact on children and
parents of abolishing programs without notice, and
man\ times Ivithout preparation to haIre those needs
met through another area. M'e need stabilized funding
so that programs can address the problems. instead of
just looking at the symptoms.

  Someone suggested that the transitional process
\\.c)r~ltl lx> easier ifIve de\,eloprd an interstate communi-
cation \ystcwi. \l.e shol~ld crrate a national computer
network so that the information on parents in one State
could be readi]\. accewible to another State. \\`hen
people st~ch as the Xligrant \cwkers move from one
State to~ulothel.and the!.ha\,e toapplyforbenefits, the!
haw to closr out theirtilr in the first State, reapply at the
IleSt, go through that ~&olr process again, and reopen
their tilrs. Of'trn it takes a long time before they get thr
brnvfits. Sonit~tinies ttiev are ready to move on to the
next grwving wason or the next location before the
bellefits e\vn get started.  So. if we had a national
network. that information Icould be readily available,
and that could hprecl up that recertification or reappli-
cation process.

  .Yso, another thing that came up was to create a
\~a!. that school credits could be acceptable from State
to State. People move through different situations.
They have things that are credited in one State, and
when they go to the next State, the school says, "I'm
sort. but this is not credited here." Then, the child has
to go through that whole process again.

  Establish one-stop shopping-and I won't elabo-
rate on that because it has already been stated. Decrease
the time spent on paperwork. Make forms less complex.
And make an effort to cut down on the duplication of
information during the recertification process. hIan\

76 Parents Speak Out for America'\ Children


"Being ready to learn is more than
making OUT children ready for the
schools. We need to make the schools
ready for our children."

timec parents go ill to be recertified. alltl they gi1.c tht
same information the!. ga1.e 3 month\ ago. Soinc.timt3
in Dela\\,are, I\hen you go to br rccertificd or to get
scr\ices. they tell !YNI that you ha\.e to br at the social
senice agency at 7:30 a.m. They see IOU at X:30 a.111. or
                        
Y:OO a.m., and then they give VOII papu7\wk to fill out
that yotl,just filled out the last time. No information has
changed, but the!- sa\ . "\Vell, !oii 1iaI.e to do it." LYc
could cut down on that process and speed it up.

   M'orkers need to be sensitive to the needs of the
parents \vho conw in and should be a\vare of the
stereotvpes and not haw negati\c attitudes tov~cls
them, becallse they wmldn't be there if the!. didn't
need the help.

  The other area of concern \vas flexibility. TVe need
to make the eligihilit), criteria tlcxiblr. For example.
some people have incomes above the gt~itlrlines to
receive Medicaid but alw have chiltlwn uith special
needs. They can't get regtllar illsllrancc' brcause the
child has a preexisting conditioll. so the insl1ranct
compan~~does not want to cover them. So those pwplr
grt lost in thecracks. \\`r nec~l topa\e tllr\\;l!-of4mooth
transitions by rnakillg programs alltl f'Acilitit%s flcsiblc.

  Chr of 0111` tlrl'g"t'\ erprwcd tl1;tt <ll? IldS ;I
\prcial iit& child who has lxwi rii;~in~tl-e~iIllt,tl into
the classI-00111.  \\Iicii tliat (Iiiltl 11.15 10 go to 111~.

bathroom, he's made to go to the other side of the
school because it takes him a little bit longer to use the
bathroom. and the!- don't want him to hold up the
other children. Me don't think that's fair, and that
situation needs to be addressed.

  \Z'e already talked about flexible hours. Emplo!,-
tvs rived to tInderstand the parents' need for dayrare,
lt*a\e for mrdical visits. and appointments with other

proglxlns. Remember that the family and their indi-
Gdual nwtl< still rxist \vhrn inconic le\,els change.
  Tl.anspol-t;rtion leas an issue and must be im-
prowd and ;idtlrewxt, espcciall!~ in rural areas. LVith-
out t~~;in~~~ortatioti, thr children arc not going to be
able to m;ihe successful twnsitions betIveen programs
mtl obtain other nwtlctl suvice\.
  .Another ;IIW of'concw-n is increasing and prornot-
illg thy 11s~ of scl~ool social \\w-kers. Social uw-kers could
act as ;tdw~at~s for parents and children so that they can
help thcw \\ith the transitional process. The!. can help
fiunlilics access sell-ices and become a primar) link be-
t\\`een sctlool s~`stellls. partmts, and the coniintinit\:
  The last and final area is that legislative action
must be taken to imprm e mu- children's transitions.
First, Eve see a role of the parent to take the responsihil-
i? to elect famil!.advocate5 in political offices. M'e need
to work to develop Federal and State lalvs and regula-
tions that better address the fzzrnilies' needs to make the
transitional process much easier. \Ve need to find a wa!
to enforce the la\vs that are already on the books. M'e
also need not tc>,just address the needsofone individual's
problems. For example. one of the parents shared that
they lvere in the process of suing the school system for
some needs for their children and that when that fight
is m'er, and that parent lvins. the next parent has to go
through thr same process. I\`r think that systems need
to Iearn from those fights with parents and those kinds
of things that happen. They nerd to learn from the
results so that other parents don't have to learn how to
light tllr cvstcms better. \Vr 11red to lrlake slure that 0111`
pl"`~l`allls are atlrquatd~ fililtlcd so tll;lt the llcwl~ that
thc7 ;irt' tlv\ig:llcYl to ,t(ltll.t~cs call IX, ;1Cl(llX~~4<Yl.
   111 ~,I~IIII;II~ I,-c \va~it 10 rc.nlili(l 1011 ot tilt. tllI.c,(,

( `s. ( c)li\ixlt.llc 1. (~,~ll~iiililt. ,tllcl c ~~~~I~lill~tli~~Il (11


seI-\-ices xv 11ecessai~~ to promote hcalthx childrm in
families that are read\. to leam. \Ve bailt to issue
another challenge-and this is not necessarilv to Dr.
Novello--hIIt lve 11ot onlv lvant our children to be
healthy md ready to leam. Being ready to learn is ttwr~
thail making our childrtw ready for the schools. LVe
need to make the schools ready for our children.

I want all of you to know how much I appreciate this
opportunit\- to be here with vou.  I want to express
appreciation to all you parents, and I don't need to tell !WI
that your three representatives up here are tremendowsl~
articulate and \-em well prepared. I could talk for 2 hocus
just in responding to jvhat the three of them l1ar.e said.
and ob\iousl\.I don't have time to do that. I.rt me u\' that
I'm not just the head of the U.S. Public Health SclTicr:
I'm also a father. I have 7 children and 1 i grandchildren.
so I could sit out there as rvell as stand up here. I hope I
can express mv swnpattiv for hour point of \ie\v both as a
           
governmental official and as a parent.

  I think it \vas ?cls. Reel.es \vho talked about the
importance of our children. So often we read in the
newspapers about bein g conipetiti1.e lvith our automo-
biles. electronics, or pharmaceutical industry,, but \ve
are here to reaffirm that the most important pi-oduct
that this Nation has is its children. Our children are the
future of America, and even' minute ice spend here is
time morn than well spent. I believe--and I don't think
it's just because this is an election Year-I've never seen
a meeting \vhere the President and three departmental
heads (three Secretaries) came, and that's a commit-
ment ofthis Government to the importance ofchildren
and doing something in this partnership between the
Federal level and parents.

  I don't avant to repeat \\-hat has been said bsother
speakers. but I uwit to respond to a number of ques-
tions that lvcrc rai\ed.  MXen President Bush came
her-r :ultL talkvrl about his comprehensive plan for
health care reform. he \\-a~ addressing a number of the
problcw~ that have been described. This reform.
\vhich will provide tax credits or certificates and tax
cl~d~ictions. will encompass 9 million Americans. It jvill
pro~idr access to health care seiTices for all poor
Americans. It Ivill create insurance pools so that people
at high risk uill not have to pav those higher premiums:
the\.`11 be in the same pool with many other folks, to
a\eragv the Irisk out. The President talked to you about
health insiiranc.e security so if )`oii move from one
communitv to another, or from one job to another,
vow health benefitswould be portable. Then he talked
about choicr. \bou see, choice and a tax credit (a
certificate) empower a parent; vou don't have to be
part of a s!-stem for just poor people. You take vow
certificate and !~ou buy your health care from a pro-
gram that \vill provide the qualin and the content of

78 Parents Speak Out for America'~ Children


services that vou need.  Then he talked about

affordabilitv and cost containment. If we can conrince
Congress to enact this plan, itwill begin to address some
of the health cat-e problems that you are encountering
and that I encounter as a grandfather.

  1 wouldjust like to answer the question: "M'hat are
\ve going to do?" I.just want to mention t\vo things and
then I M-ill sit down. First ofall, we at-e here to listen, and
I think listening is probably the most important thing
\`ou can do so that you understand the concerns. Yoll've
heard the recomtnendations for solving these prob-
1~1~~s. But Ive need to do more than listen. Here's onr
example ofwhat 1 am going to do. Each quarter I meet
rvith the officials of State and territorial health depart-
ment\ and with vour State health department commis-
sioners. Each quarter I meet l\ith the L.S. (1onfercnce
of Ci tl, Health Officel-s and the Sational (:onferencc of'
(:ount~ Health Offtcers. I'm going to discuss the things
that you've been talking about with them because this
is a partnership. Itlras said that leadership should come
from all of us and, of course. it's got to come from
parents, our neighborhoods and communities, WI
cities, our counties, our State, and the Federal Govern-
ment. Only when WC all provide that leadership \vill this
svstem reallvwork optimall!,, and I will pledge to you ml'
support to do all I can to work not onlv at the Federal

:


_.
            - 2

"We G&t the same things. Y~~~-&~got
to start workS$ng up from +z bottom,
and we've got to work harder from
the top so;-that itSgets z& the way
through." -

level but down through that system of health officials to
see whether we can implement your recommendations.

  Sow let megive you an example. and time doesn't
permit me to gi\-e many. I agree with 98 percent of
ely.thing !,ou'j.e said. Let's talk about one-stop shop-
ping. You want one-stop shopping, and I want one-stop
shopping. 12'hy don't lr;e have one-stop shopping?
There are communities-and I have visited them-in
the United States of Xmerica lvhere they have one-stop
shopping. Ifwe all avant it. let's do it! There isn't any
disagreement. LVe've talked about having a uniform
application form. I'm holding up a little document
that's called a hlodel Application Form, and this was
published in the F&lnl l?qistPron December 4, 1991, a
little o\`er a month ago. It lvas developed in collabora-
tion lvith State and local people, and it involved the
Department of Health and Human SetGces, the De-
pat-tmentof.~griculture,;~nd the DepartmentofEduca-
tion. So, at the Federal level, we want a simplified,
unified. uniform application. Sow why don't we ha\le
it> \Ve want the same things. You've got to startworking
up from the bottom, and we've got to work harder from
the top so that it gets all the way through.

   You've talked about flexible hours. You want
flexible hours; you not only want them, you need them.
And we want flexible hours. Last Friday, Secretaq
[Louis] Sullivan [Health and Human Services], Sur-
geon General Novello, CDC Director Bill Roper, and I
were in San Diego to talk about an immunization
initiative for infants. And what were we pounding the
table about? Flexible hoIn-s, so that parents could bring
their kids in the evening, on weekends.

  Let's make the systems user friendly. You want
user-friendly systems; we want user-friendly systems.
Let's work together to get it. We're not against each
other. W'e're working for the same things, and some-
how we have to get it into the middle. And I'm willing
to work on that, and I know you ivill as well. I'm simpl!
tl?ing to say that we are strijing for what you Tvant, what
~011 are talking about. Perhaps we can p11t 11101~~ ]X)\I.`l`
iiito our grant applicati0n.s.


  Let nie.jitst end 1,:. talking about this doctm~en t. \\`e
lta\,e Ivltat \ve call Healthy People 2000. This is not a
Federal program; it'\ a national program. You helped
develop the 22 p - t iority areas and the 300 specific, tneasur-
able, realistic goals of'\\hcre this Nation could lx h! the
vex 2000. l\`e'\~ pulled Health~~ Children 2000 out of a
much thicker document. and of the 3,000 measurable
ohjecti\es for the Nation forve'ar 2000, 1'70 of them t-elate
to mothers. infants. children, and adolescents. M'e hope
that~~,tt~villwork\\itli IISSO that c~en before thr~~earY?OW,
as soon as possible, this Sation \vill lta~e arrived at 1vhet.e
\`ott-as you helped us de\,elop these--said Ice ought to
be. .Xtid we're \villiiig to work lvith you; 1t.e are partners.
and we thank YOU for your input.

John T. MacDonald, Ph.D.

I ~vould like to thank our presenters for~\hat I cotisidet
to be an extremely inspirational mewage. hut one that
has a great deal of meaning to us. I h~~ild like to focus
my comments in terms ofthe presentations 011 children
and their families. I just rrturned last night front the
Organization ofAmerican States mertingiti ~~tiatemala
City on issues that affect the hemisphere in terms of the
same kinds of things that lve are talking about toda\.-
precisei\ the same kinds ofprohlems that IWI'W brought
here. IV'e are dealittg uith a hemispheric prohlern that
lve have to address ifIve are going to sutTive. not,jttst as
a Sation. hut as a hemisphere.

  Il'hat I heard tocla!~. in sum, means involvement.
flexibility, a role ofadvocacy, and finally. as Larry [Bell]
shared with us, consistenc!~, continttit>-. and coordina-
tion. I would like to talk a little bit about commitment,
as the other C. to children and their families in an
integratedwav. a much more integrated wan than M.e'\.e
ever done before. In my trips at-oruld the countt? and

80 Parents Speak Out for America'\ Childrrn

;tl~) itt slwnding 34 \KII-s itt this business of children
and f`alnilies. I fo~lncl that, on the awareness issue, it

ttteatts \X)LI must not only he tnade aware hut you must

have access.

  ,Jim rwd thr term "user friendlv." Our schools
txtsicallv have never been user friendly because the
scltools that 1%~ har,e todav are designed for a societ),,
frankl\-, that doesn't exist today in tnost areas. I can
remember, sotnemonthsago, [Secretat-yofEducation]
I~mat- [Alexander] convened a group of us with an
eminent sociologist, a guy I have a lot ofrespect for and
who hasdonealot ofworkin thisareaforvears. Wewere
kicking around the question, "M'hy don't our schools
\vork any more?" And he said, "Heck, it's very basic.
LVhat vou are trying to do with your schools is for a
hunch of folks who don't exist any more."

  This gets to the access issue, what !ou need to do
\I-ith folks. They can't get at you, and you can't get at
them. So ~41~ don't YOU think about it? I think back to
the txprt-icnces I had as a principal years ago, working
in an area \vhere poor parents had many of the same
prohtettts that ~UII have addressed in your presenta-
tions. The\- worked. They had to jvot-k. They had to get
tttcir w)ung\ter\ off early they couldn't get hack to


"
. . . you've got to join us in that message
that. . . our schools must become user
friendly, to provide a setting for one-
stop shopping-places where education
can go on and where mukibm3y senices
can go on. . . ."

cchonl to attend sessions orconf'errnces or this. that. or
the other thing. At that time. xve had Title l-that \vas
27 years ago, when I came on board-and lye developed
what we called extended school. This is very. similar to
what Lamar mentioned that Decatur [Georgia] is doing
1101~. M'e ha1.e the Federal resources to open up the
access issue. You can change the mindsets out there if
you .join us in that attempt, working \vith our State
commissioners, your State legislators, and your local
school folks to "a)- that there is a system out there that
will support your needs, if it is prop+. designed. LVe
want access to it, and we want to use it. But !w~`ve got
tojoin us in that message that we arr tqing to get across
to people that our schools must become user friendlv,
to prwide a setting for one-stop shopping-places
where education can go on and where multif:nmil~
services can go on in terms of local agency semices, State
agencv services. and. of course, the edrlcational srlvices
that should go on on a continumn, places where a
school operates from early in the morning until late at
night and on weekends and is open during the school
year, where it never closes, and it shouldn't. It's your
largest real propert!' im.estment. It doesn't mean the
teachers. as I.amar pointed oiit iii his remarks. haw to
take on all thew other chores. .rhCV ;1l`P not tl.aillcd to

do so-fine. But with that kind of setting, or a setting
comparable to it in a community, we can reach and
provide fi)r children and their families the kinds of
needs that 1j.e need to meet today.
  It really bothers me terribly-to the point where I
don't understand it-lvhen I think back to the late
19.3)~ and 1960s. LVhen we built elementam schools, we
built little clinics in them, and dental centers, and so
forth. TI?. to find a new elemental? school today that
has that provision where lve can provide that kind of
sellice to a child and his family. It doesn`t happen an!
more. \Z'e have to return to some of the things we
identified earlier on that parents need and children
need and get back to it ancl make those provisions and
open up those schools to do those things.
  Let me talk about transition for a minute. Ldrly
[Bell] ux+ talking ahout transition. Let me throw out a
bias of mine that we'w been tqing to work with-
[<:on~missionr1-- of the ,Administration for Children,
Youth and Families, Department of Health and Human
Sel-\ices] \l'ade Horn and his folks. Transition. to me,
means from conception to birth; it means from birth to
school and community; and it means to the final thing
that the President has also mentioned, and that is to
making a life. Cnless Ive have the kind of system in place
that provides for that and can deliver that, we're going
to find ourselves generationally not making strides that
we need to make to address the needs that we have
toda!,. Looking at some of the things that I looked at for
the past 3 days in a Third M'orld country-that can't
happen here. L2'e have the ingenuity, resources, intel-
lect, and experience that most people don't on how to
approach this effort, and we can do it.
  Let me sa!`in closing thatifweusewhatwe know and
use it creatively, lve can de\-elop support for what we are
tl:ing to put through in I-ealltllorization ofall the elemen-
tal-y and seconday programs-that's 57 programs and
currend!. over $9 billioll. Mhat we are tn-ing to say is that
\w need a massiw urban inten.ention program utilbing
Federal IWOWC~Y ill conjunction \\ith State and local
resources to prcnide for communities. an opportunitv to
pl;ii~ fir \chatt~\w liiiinht7 of IXYII~ ir take5 to pull those
w5iourct~\ lf)j:t~tl~tv. Iocatiqq the scl~ool ~~~~ainotlwr center


as a hub to pi-wide an csrcwclctl set-\& or euttwdrd
school concept so that children and their families can
utilize. thevarious resourcesin collaboration to accommo-

date the needs we have.

  \Vr have many programs out there currcii tly. for
example, that can help each other.  For example.
\Vade's program [Head Start], even with the President's
increasr, will still not se17.e all dir ~~oringsters Ivlio are
currently eligible. But M'ade can use our program Even
Start, which is for children 0 through 7 years old and
their parents, to provide not only parenting and child
care sel-\ices but also job training and placement ser-
vices. That program can buy Head Start seiyices. can be
used to expand Head Start sellices, or can create its
own. Our Chapter I program, lvhich is basically age
neutral. can also be used to by Hrad Start sellices.
expand Head Start senices. or bur. their o~vn.

  In other words, what I am sa!+ng is that in terms of
integrating what we haw currentl\~ on the books today,
we can do a better job. M'ith our Department of
Agriculture, with its LVomen. Infants. and (:hildrtw
[MI'IC] programs, \ve've recenth signed a 1lemoran-
dum of Understanding I\,ith them so that our \Ligrant
programs can iitiliye \+I(: stwice5. \Ve \\aiit lo c~xpantl
that to Even Start because (Congress. on our request. has
now expanded the age range. Ilot for children from 1
through 7 years old. but from 0 to i: I Irish I could get
it from prenatal to 7. But it's in this\va\.that \vv tie things
together. and the Surgeon (;cnc~-al and hrr officr l\ith
the Healthy Childrrn Read!, to Learn Task Fol-cc has
been instrumental in pulling those of us together \vho
have been wwrking on this so that, again. Eve are mart
integrated than WE have been before.

   M'el~illcontinrle tostrive in thisdirection, butweare
going to need your support lvith Congress to continue in
this direction, lvhere we are pulling together and coordi-
nating all the Federal efforts around the one focus-lvhat
L\-e need to do for our children and our families who need
them the most. Thank you VCIT much.

Pwsident Bush has told those of us whom he appointed
to jobs in his adininistl-atiotl that he wanted us "to work
to t-rorient gor.ernmenT to better seme the needs of
individuals." 1 rtmember that quote exactly because I
thought that was so critical to defining our jobs; it is
certainlv critical to defining why Dr. Novello has con-
\,ened this Conference: to talk about one group of
people-children and their parents-and hog., bywork-
ing together with parents on behalf of healthy children,
~vc are helping children be ready to learn and to grow
strong. Your confidence in Dr. Novello is vey well
placed, and I know that she has been not only an
outstanding spokesperson for these issues, but also, in
convening all of us together, is making a constructive
ef'fort to seeing this happen. I've learned a lot alread!
today, and I'd like to share some thoughts in several
areas: one-stop shopping, senice coordination, im-
pro\iyg services. empowerment, and then finally some
ideas about solutions.

  Before I start. though, first of all I wzit to explain
\\-h!. I am here. r\s Secretay. Madigan said when he
spoke !wterday. the Department ofAgriculture spends
more' than half of its budget on food assistance pro-
grams for the poor and for children throughout the
country. So in m!. portfolio, I manage the Food Stamp
program, school lunch and breakfast, MIC, summel
f&d program. food program on Indian resen,ations,
food for the elderly, food for childcare centers, Head
Start centers, and others--there are 13 programs all
together. with Food Stamps, school lunch, and 17C
being the largest. Also, I come here as a colleague of the
people at the table and as a colleague of Dr. Novello's
and Dr. Mason's.

  Onr-stop shopping, as Dr. Mason said, is abso-
lutely a must around the country. We agree totally on
that issue in bringing all social services together, and as
every speaker here said, that is a critical component. M'e
have been sending a lot ofbooks to Delaware because 12
centers there have combined all social senices except
forjob training-M'IC. Food Stamps, AFDC, Medicaid,

82 Pa-m\ Speak Out for America's Children


\arious child development projects and programs-all
together itI one office. I visited one of thaw offices: it
was a pleasant place. One receptionist see\ the clients.
and all of their information is on a computer. u9~ich
sounds simple and makes sense. But it wx\ a Hugh
undertaking for the State to cotxince the different
Federal agencies ittvolwd to all participate in that
project. It is a tnodcl. and \\v encouragt tnan~~ States-

we sent many people there--to see how that works,
hoping that UY can help them go more tolvard one-stop
shopping in putting sewices together.

  The President mentioned the immunization pro-
gram. M'e've been vev involved in that from the M'IC
perspective because it isone ofthe fewplaceswherever)
\uung children come within the sx-stem.  If we can
combine setTices and provide immunization services
there at L1'IC clinics, it might he a \`et-) productive and
helpful program to initiate. To that end, Dr. Mason and
I ha1.e bcrn wn-king aggressively with health directors
arottnd the countty~ to promotejoint senices for immu-
ni/ation and I\?C.

  Secretar~~ Sladigan yestet-da!- mentioned direct
certification fix-children in the school 1~1nch program.
This is a ct-itical program. and I Icant to expand on it
brieflv. It doew7~ make sense that a child may not be
able to access a school lunch or breakfastjust because
ofa hunch of papetxw-k that wxsn't turned in. Thewy
the system uwrked before direct certification, as you
knolv, was that at the beginning of the year, the school
sent home a form, through the child, to the parent that
said, "Please fill out this form. Your child may be
eligible for a free or reduced-price meal; tell us your
income." Many times those papers don't get returned;
a lot of parents don't want to fill out that paper; sotne
parents may never get it; some parents may not be able
to read it. So children end up not being in the school
lunch and breakfast program, under which they ma)
be eligible for free meals, because of paperwork. What
direct certification is doing-and in the counties that
have started this already, we'\-e had great success. and
it jusf began in September-is martying computer lists.
The). mart-y the computer list of the kids enrolled in
school with the families 1 hat are enrolled in AFDC and
Food Stamps. The!, keep this confidential; it follo\vs all
the confidentiality requirements. But instead of get-
ting a letter stating that `kwtt- child may he eligible,"
\vhcn this \vorl;s-and it has Ivot-ked so fat- in the mast\
schools that lla1.e startr,d it-pat-ents get a leclc,l- 21
home that s;tu. "\i~~1t~~~ltil~Iis~~li~:il~lr~fi~i~~cil00l IIIll(~I1."
.-\ll(]. in f':lcl. \\]lyrhc.t tilt' le.ll(.l c'\t`l gc'lS ll()l11(' (`1 Il"I
()I- []l(, p;,1(`,1, ,(.`,(I\ I]](, 1(.11(.1 i\ it 1~~1~~\;1111 i1t.t .ill'(' lII(.


child grts the lt~itclt or the brwhtlt5t. 1 \\ot~ltl ~ttco~ii~-
agt' people to go l10111~ ;tntl il4k their school districl if
they ha\7 done this 1~1.

  On the Food Stamp and .\FD(: hide. I 1~1s at the
Department of Health and IIttntan Senices managing
the ,\FD<: program beforr I cants IO [the Deparnnen~
of`] Agriculture. One of` the I-casons I ~\`a\ ashed to cot~le
is that the;\tltltinistt-atiott caresabout ttying to put these
programs together. Alntoat e~~~~otte ~vho is att AFDC
rrcipiettt receives Food Sta~ttps, :und tlir ttiajorit\. of
Food Statnprecipi~ntrrecri\r,~FD(:. Itcertainl! makes
sense to sinnplifi the rules and regulations. The people
who determine eligibilit\. have thick books in ever) State
for each ofXFDC, Food Stamps, and Medicaid. Atn~~ne
having to learn the rules and how to ~vork through them
takes OII a fairly remarkable chore. So Ivhat Eve are doing
is \2-ot-king on the Federal level to identify eligihilit\
requirements. So far, lve've identified 32 eligihilit\
factors that at-e different in the t~vo programs. ancl \ve
are lvot-king now to determine \vhich ones Eve can
change to make them the same ot- similar, so it \vill he
easier for eligibilit%. ~vorkera to manage. and ttltititatel~
easier for those \vlio at-e in need to access the sl3tettt itt
both programs.

  M'e learned from this process. ho~ve\w, that MY
have to idetitie- these [need4 chatige5]. bitt \\`e can'1
make all the changes otu-selves. .\lall\~ of thr ctlall~:es
\\ill require congressional approL4. and we \\ill be
looking at changes Iv. - can t~iakcc in the Federal (;o\-vrti-
ment and idrntifving jvhcn NY nercl to go to (:ottgrew
to request other changes.

  I found out one of thesr changrs lvhtm I first catttt~
to this,job. In Alahat~m I \vrttt to a Food Stamp office
to apph for Foot1 Stamps because I wanted to we Ito\\
the system lvorked. I filled out lots of forms. and tltrtt
the worker gave me one fortn that inclicated l had to
take it home and have tny husband fill it out. I haid.
"\I%!~? Yott'rr taking me at rn!. uwrd that I'm the head
of the household, and all these other fin-ms are OK for
tne to sign. LZ'h\- do I have to take this one home fc,t- him
to sign! -** "\Vell, because that's the requirement. Evet-r
adult in the housrhold has to siCgn this particular form."
iVeIl, that didti't make an! sense to me, \\hatever; it \vas

a tctrtn draliug \\ith ~vltrther or ttot \vc' \vere L'.S.
citiLettr. So. 1 came back and asked questions about it,
and a lot of'tlte cliCgihility workers laughed. M'e'd been
telling you that this \+`as duplication fi)r a long time. LVe
proposed in the Farm Bill to Congress that they change
this and elintinatt: the t~vo signature requirement, and
MY got it changed. Thar leas the good news. Then we
fottttd out that .XFDC: and Meclicaid have the satne
reqttirrtnetit.

  The final point on setTice coordination that I
\vatlt to mention is what I think is the most exciting one
we are working ott, and that is called Electronic Betteftt
Transfer. M'e ha1.e now in the Food Stamp program a
pilot prqject. and I lvant to explain what it is. This EBT,
as it's called, is using the equivalent of bank hTAM
[Xutomatic Teller Machine] technolog? for the pur-
pose of pro\iding benefits for Food Statnps and, poten-
Ml!., fat-.kFD(:. \\`I(:. and other programs as well. The
\~a\. this ~vot-ks is. or would be, that there are no longer
food cot~ponx in any cot~~tnut~ity that undertakes this
project. People get a plastic card ancl have a private PIN
[Pctvmal Identification Sut~~het-1. The State or the
c01111t\ pl-ogl-"llls the atII0~1tIt of inone!. that \\ould
otlieruist~ he food coupoti tiiotie\' into the a~~otmt.
\Vheti a client takes the card to the grocery store. the
t-ecipienr runs this card throttgh a titactiin~ at the
checkout line. and it debits the appropriate Food
Statnp accotttit for that titotitli. Shr cot~ltl also else it. if
it's an .-\FD<: card. in a bank cash machine to take out
hr~- .-\FD(: allortn~ttt, ttot ttrccwarily in one lump sum,
altliough that is ccl-taittlv her option. hut alro in an\
~~lllollllt\ that she nxnts for the lllolIttl

  \Vt- haw, itt the areas \vhet-e we are testing this
[EBT]-Reading, PA-\: .-Ubttqttet-que. X51: Casper. L\1.
(for \2`1(:): Ramsey- ( :outtt\., 11s; and Baltimore, \ID-
onh praise front clients \vho have been using this and
from the Governtnent and the pri\.ate sector ~vho ha\.r
been using it as ~~211, with one exception that I \\ill
mention in a minute. The people uho use Food Stamps
in ,AFDC ha\.e hem thrilled with it, and the comments

that we heat- and the research that we have Sal' that
people like it. They like it because, first of all. it gives
them security people don't have to wait at the mailbox

84  Parent\ Spsah Out for America's Children


"Children are empowered by getting
a good breakfast and lunch at school
so that they can learn better."

(as they must if' their food coupons or thrir .WD(: is
mailed) to make sure they. get it.  They dott't have to
cash the .%FDC check in one lump ~111 and aomt.tin1t.s
pay rnone)' to a check cashing plaw to get it cashed: it
empowers them to be able to make decisiona about ho\\
much money the!, scant at each particular titnr.. \tllrn
the): use this card in the grocety store. the\, dott't haw
to deal with the coupons and counting out the coupons
and dealing with it: the\, don't haw to deal with anvone
else trving to steal and use their coupons before the!, get
to thegrocet-ystore. It'saquicket-wa~toget through the
system when they get to the grocety store.

  In M'yoming, one woman at a cash register told me
that she had been a \7C client and now she was
working, managing the cashiers in the store. One of the
reasons that she liked working there MX that the card
took the confrontation away in the tine. Because (this
program was in MTC, she said, but it could \vork in M'I(:
or Food Stamps) the machine says what's eligible and
what's not eligible, there doesn't have to be a battle
between two people for that purpose. It's a benefit for
the stores; it helps them mo\`e people through the line
faster. It's a benefit for the clients on L27(: because !-071
don't get otw~ouchet-, one time a month. MXenvou get
one voucher once a month \`ou haw to ust' it all. atid

that's tough if they don't have vow type of cereal that
day. M'ith this new system, you can go back and use the
card again; vou don't have to buy all of vow milk once
a month and have it rot in the refrigerator, but you can
go back o\et- and over again. It's a real plus.

  It'salsoa plusfor the taxpayers, I have to say, because
it will ensure that all of the money that the taxpayers are
spending on food-in out- budget this year is $34 billion-
\\,ill be spent on food. and it ~511 be an overall plus. M%at
~vt' have to do is ensure that it's cost effective, and the wav
that it's cost effecti\,e \ve hope, through our studies, is
through combining set-\-ices.

  If \ve combine Food Statnps and AFDC and per-
haps MI<:, and perhaps someday other programs that
\vc can sa1.e on the administrative costs. which I think
Eva\ t~~entiot~ed b\, a couple of speakers before, it wilt
tl+ 11s ill th' hllg J-1111. That is the one problem: \ve
haw not yet pt-owd that it will save administrative
Monet-, but lve are determined to do that. States can
implement this program for Food Stamps after April 1
of this !~at- without a ctetllotlstt-ation project.

  >-L5 far as imprwing set-\-ices, as Secretary [of@icul-
ture] .\Iadigan said. President Bush for the last 2 years has
iiicreased the 1\7<: program by proposing larger increases
than any president ever-S223 million last year. $240
million this year. That combined total is going to help us
set\`e more than 300,000 tnore people in the \?C pre
gram. Improving senices in M'IC goes beyondjust putting
more people in the program: it extends to improving the
actual senices that we provide.

  One of the things that we've done in the NTC
program is to look. for instance, at the issue of protnot-
ing breast feeding, and the issue of helping to empolver
mothers to make a choice between breast feeding and
bottle feeding after they have given birth. Once when
I visited a\$`I(: store in Mississippi and Ivent through the
line looking at what I Mould buy, I told them I was a
breast-feeding mom. I scanted to go through the line as
a breast-feeding tnom attd pick up the food I would get.
I picked up mv peanut butter. eggs. cereal, milk, and 111:'
other products and thn they said. "Oh, rvell. if' \`()I1
\\c*-~JI'~ bt-t~astfecditlg. ltet-c. this i'i the ti~J~l1llI1~l tIl;ll IOIl
\\y,(]ld MT'," \l'ell. thrl~c' I\;)\ \O 11111(.h fOJ~lJlll~~l f(,J rlJ('


month that I couldn't carry it out of the `store! It is no
wonder to me that onlv 10 percent of M'I(: moms
breastfeed, when people may he thinking that they ma!
be giving up thislvondet-fit1 option of this great formula
for their child. Not only would we like to empowet-
women in making this choice. hut also provide mot-e
nutrients for women who are breastfeeding. LVe filed a
notice with the I;p~~tnl Register asking for comments.
and we intend to file a proposed rule as soon as we can
to offer a separate package for breastfeeding motns in
the MIC program.

  In closing, school breakfast is critical for children
coming to school read\- to learn-all of our studies
show that. Half the schools that ha\-e lunch also have
breakfast; we can have more. We've been going aroutid
the country encouraging schools to offer school break-
fasts, and it's realty critical for children to come to
school ready to learn. The swmier food progratn is
available-schools can offer it during the summer and
pri\ate non-profit schools can offer it during the sum-
mer to help children have tneats at school. ,-\I1 of these
programs empower people. The M1(: program em-
powers mothers to help make good decisions hv educa-
tion and nutritional support. Childt-et1 at-r empo\vet-ed
by getting a good breakfast and lunch at school so that
the), can learn better. These programs are empowered
by your comments and your direction to us.

  The solutions? How can we ivot-k together? EBT
can start in States for Food Statnps aftet- Xpril of this
year. You can tell \our State administrators and own
county administrators that you think that thev ought to
have EBT. You can work with our regional offices. M'e
will work with you, and I will takeJim Mason's lead and
work with the public welfare administrators and com-
municate )`our comments specifically when I meet with
the State Welfare Commissioners in 2 weeks. We can

work together with changes that will simplify the appli-
cation of AFDC and Food Stamps when we come up
with proposals. We can work together becausewe need
your help convincing our colleagues on the Agricul-
tural, M'avs and Means, Finance, Education, and Labot
Committees. It would be helpful if we had similar rules
for att of these programs. You also can help by going to

86  Parents Speak Out for America's Children

vow school, and ifvou don't have school breakfast, tell
the school. school board, or someone else who is a
decisionmaker in your community that you want school
breakfast for the children in your school. It's an entitte-
ment prog~xn; the Bush budget anticipates at least NO
schools entering the program next year, but it takes
cotntnunit~ leadership and community support to get
that done through the schools. Every person in this
room, those of us at this table, be they the parent
presenters or the people in the Administration, can do
a lot to work toget her so that we can take vour direction,
the thoughts that we have, and implement. We can
implement the President's direction to us to reorient
government to better seme the needs of individuals.
Thank you vet-y much.

Wade Horn, Ph.D.
Commissionu~

.-l[lminist,-ntio,,for Children, Youth andFmnilies
I `. S. De~xwtm~nt o]`H~nlth nnd Human Sewices
It is a pleasure to be here today at the closing day of this
Conference and I want to thank the Surgeon General
fhr the invitation to participate here, but particularly to
thank her for her rzisdotn in acknowledging and


t-ecogniAtig the importance of the role of parents in
helping to get their kids to school health! atnd ready- to
learn. If we needed any mhdation of how criticall\
important parents are, we'\.e heat-d that fi-om the three
reprrsentatives here on the panel this mot-nitlg.

  I lrarn notjust from parents but also f'tx~ii my o\vti
children,\vhich I think alI of'u~do. Xnd it'4 Ixxxus~ of.m\
01vti experiences \vith iii\ olvti kids that I ha\.c t~~iiiaitietl
committed to tnitig to help iI\ bc3t I cat1 in 1111 pf-rwtll
position, help programs help parettts raiw their kitls.
because kids are out-future. I could bc txxl brief`hew and
1 could ~a>`. "Guess \vhat. 1 t-t111 Htwl Stat-t. Head Start
loot-ks; it's great." tit doubts, ;iiid cvmhod\ could applaud.
Because Head Start i.c a great pt-ogram: Iwotrw it. in fAct.
twbodics much of\vhat it is that thr patx*nfs tal!-.ctl about
toda\~. It embodies parent inwl\t'm~nt and empowcl--
ment. HeadStart haslongrecogt~i/edth;tt pat-ettt4ar~ tJtt
firstand niostitiipot-tatitedttcatot~softltrit~cltil~It~eti. .111tl
NY'V~ embodied that etnpo~verment in thr Hcd Start
parent policy councils. Also, Head Start integratccl health
senices with social senices long ago. Do thou know that
Head Start tnakes arrangctnenr.s for one of the largest
delivery systems of health senices to poor childt-en in this
cou11t1-G Last !`ear, more than 600,000 children in Head
Start got free medical and dental screenings and follwup
treatment, as well as itnmunilations, through the Head
Start program.

  It has also been a leader in removing barriers to
children with disabilities in terms of incorporating
them and involving them in the program as well. Head
Start has long recognized that children with disabilities
need to be mainstreamed. M'e were doing that back in
196.3. I was in the 5th grade, but in 196.3, we \vere doing
that. And we were a leader in that. In fact, today, almost
14 percent of all children enrolled in Head Start are
children with disabilities. We even pay parents for their
knowledge. Do you know that almost 40 percent of all
paid staff in Head Stxt are parents of children either
currentI\- enrolled in Head Start or formerlv enrolled?

But I'm not satisfied. and we shouldn't be satisfied

because there is still much to be done.

  I ani,just going to mention three titw challctigt3
and initiati\-e\ we are undertaking in Head Start. Fit \I

of all, \ve need more money we need to serve more kids.
The President, over the last 4 years, has increased our
budget by $1.6 billion. That's an incredible achieve-
mcnt--that's real money, even here in \%shington.

  The second thing we tteed to do is increase senices
to adults of children enrolled in Head Start. In the old

da\-s. \vc had this naive belief that we could save children
1~~ taking them out of`the home, working with them, and
wnding rhrm back. Lye know that doesn't work. Ifwe are
going to help children, UY have to help their parents.
O\w the last 3 vears 1t.e have been improving the kinds
attd quAiF. of senices to adults of children enrolled in
Hcxl Stat-t. particularl!.in the area ofadult literacy. By the
twd ol'this~~eat-, \ve lvill have an adult literacy program in
e\w?. Head Start progt-atn in this county. M'e need to do
a beuet-,job of' \\,ot-king lvith substance abuse problems
\vhtw the\. exist in the families we serve. A recent stud!
sho~~x that at least 20 percent of all adults who have
children enrolled in Head Start have a serious substance
abuw problem. \Ve need to do a better job, and we've
hem workingwith Dr. Mason and his staff, particularly in
the Office for Substance Abuse Prevention and also with
the Office of Treatment Improvement, to tv to better
coordinate senices around substance abuse issues in
Head Stat-t. focused on the parents.

  The third thing we need to do is to use Head Start
as a wedge to increase job skills of the parents who ha\ie
their children enrolled in Head Start, and we've been
doing that in active collaboration with the new Uob
Opportunities and Basic Skills training] JOBS program,
the 1988 Family M'elfare Act. and also with trying to merge
or coordinate with the [Job Training Partnership Act]
JTP.A prOgI-dlllS aS Well.

  M'e have to recognize that times have changed. We
have a number of homes with no parents at home when
Head Start is done at 12 noon. \Ve have to do a betterjob
of coordinating with new childcare monies, and particu-
larly childcare development block grant monies to
etlsm-e that, for those Head Start children who have
parents employd outside the home, NY can krrp thw
ctmters optw so tliosr kid\ dotl't h;nc to be bttwY~ aCl~()~~
t,)\,.ttT();tll()tllt.t cc'ttI(`t.or.\\ot4(`\(`t ~~rt~tlittlot~~lt.t~~~~~~tt~.
,tallt IIOI~I~. \\itlr t11c. 1101x' tltitt \~~~I~c~~N~(I\ i\ tftc,tc'.


   Finall\-, in WI-ms of`tl-ansition. wv haw to do ;I better
,job of mo\ing kids from Head Start into the public
schools. IAI-IT Bell talked about nuking our kids rcad\, fir
school. but he also said that \VY ha1.e to do 3 better- job of
makiligo~u-schoolar~ad~-fi,rolII-kids. \Vv do. Sonictimes
people point to Hracl &II-t. a11t1 thev sin. "DOYOU think it's
                          
a success? It`s not ii stIccess. BCYXL~Y~~ kno~vnhat? LUteI
vow kid gets a vear w tuv of Head Start. .5 wan doum the
road, the gains start to dissipate." A~lcl I ~a!-, "Sure. If the
child graduates into neighborhoods that are riddled \vith
violence. ifthechildgraduate5into homes thatarr riddled
with substance abuse, if the child graduates into 5cl1ools
that are unresponsive to the needs of their children. rthat
do you expect?" Head Start is not an inoculation against
eveI?thing that can possibly go MIXES in that child's
communitv. The fault is not Head Start's; \ve nerd to do
a better job of jvhat happens to those childwn nllrn the\,
leave Head Start. That's why it's been 50 grati+ing o\w
the last 3 vears to work with Jack ~IacDonald in enawing
that we make those connections het\veen Head Start and
the public schools. Thankvou for the imitation to be hew.

Christine Nye
Diwcto~
.\lrclircd Hll ww 11

I want to thank [parent presentvr~] I .~I-I?' Bvll. Sliwlita
Reeves, and Ellir \.alcle/-Ho~~e~111~111 li)r \our comments
this morning. It's ahvays so crucial :ulcl important that \\c'
hear the things that concern and intt'wst yu \luch of'
what I heard this morning had to do Lvith the .\ledicaid
pro`gram. The intereatiyg thing about this (Zonfcrence
and\\.hat I've heard thismorningiis that it ctrncka rrle\wit
chord for me not onh, as a parent but also a5 an adminis-
trator of the Medicaid program.

  `1~ Dr. X4ason said, I reall!~ didn't know hou, to fl-ame
111~ remarks to YOU this morning, but it's absolutel~~ true
that you lvant these things to happen. M'e IVdIlt these
things to happen too, so \vhy don't the!. happen? Let's
nuke them happen, and I think that is so important. Sot
only are we all as parents sorneho~~,affected or infected b!
the things that you said this morning; it goes deeper than
that in other ways too.

  Forexample, I'm the parent oft~\,odaughters, one
of ~vhom should ha\.c lxen 4 a month ago, hut who,
despite all the efforts oftechnolofl, died. .&id I'm also
the parent of a little girl l\ho lvill he ?J next week. So I
ha\v, personall>-, lx~ause of that, a deep commitment
to man>. of the things that you do. Sirriilarl!,, I can go
through people i11 the Medicaid Bureau \vho are lvork-
ing OII eligihilit\. pohc!., on home- and community-
based 1vaiI.er.s. ul~o also have a commitment to making
things better, not only ;IS professional people working
in the Medicaid program, but who also are per$onall!
inwh.etl in some of the things that VOLI are involved in
as well. And that occurs not only at the Federal level-
that WY as people \hare these things-but also at the
State and local lt3.elr.

  1 I\ nnted to make a few comments today, and there
are man! things that I could say-so may'things thatwe
arc toting to accomplish, so man\ areas \vhere \ve are
still falling short, so man!` things that we have tolvork 011
togc-thrr.  \fedicaid is a massive program. It senes
almost :<O milhon A~niericans. and 1'7 million of those
;irv children. (Zhildrcn xc disproportionatel~~ repre-
sctitcd in tc~`rns of the tiIumbeI- of those in pavert!- that
;II`c ~cncd. \lorc? chiltlrrn in povertv are selyed than
ad~~lts 01' the disabled, fi)r example. But despite that,
and !OII all kno\\ this. it's become such a visible thing of
late. that wc` still seITc` les5 than 30 percent of people in
povvrtv in this counti? despite the fact that we are
q~vnding 0w1- S 100 1 11 10~1 o11 lledicaid this veal-. So,
              `II'
.\Iedicaid is receiving a lot of focus, not only through
reforms in the Medicaid program but also, more re-
tenth. through the President's proposal for- health
reform in terms of Medicaid's key role in that system
and also through additional ke). reforms that have to be
made in Medicaid to make it more responsive to the
.Xnierican people.

  There have been enormous changes in the Med-
icaid program lately in response to the co~~crns and
issues you've raised. There have been expansions in
eligibilitv. There are options and mandates in manr'
States; as many as 20 States have enormously expanded
eligibilin for children to the maximum. There are
changes for pregnant lvotnen and for inf'&its, again,

88  Parent5 Speal Out for America'\ Children


enormous changes, in response to the conce~~is ex-
pressed by you and others. I think the concern that I've
heard expressed repeatedly is about the dropoff or the
"falling through the cracks." That problem is one that
has not been addressed adequately so Far, but again I
think that the President's proposal is one that would
address it.

  In terms of sell-ice expansion. again, in \ltYlicaid,
there is an enormous recognition of some of the prob-
lems that are faced-increased flexibility in pro\-iclillg
waivers to keep disabled and other children at home
and not in institutions, and c'normous changes in terms
of the increased use of case management for various
population groups in Lledicaid. particularl!. fi)r preg-
nant women and for children, but also fog- disabled
children. Mhat I consider the greatest child health
reform in Medicaid since itwas enacted is the enormous
expansion in the Earl!, Periodic Screening, Diagnostic.
and Treatment Program. thy EPSDT Program, the
child health screening program in this countrv.

  Along with seI-\-ice and eligibilit!,expansion, there
are also enormous concerns about access. Tying to
streamline these application forms, getting etigibilit!.
workers out to places, and tying to expand the amount
of dollars paid to community health centers and persons

"1 ?hi%@gh your networks, the pc&er
and co&&on you are deklbping,
you can effect change, thGugh your
effective ad+bcacy."



providing obstetrical and pediatric services are all access
issues in dealing rzith red tape problems, trying to
overcome some of the barriers that physicians and
other providers have with Medicaid. But again, as Dr.
Mason said, these are things that you and I believe, and
they are happening, but we need to continue to make
them happen.

  One thing that is a reality about Medicaid is that it
is a Federal-overseen and SLate-administered program.
States ha\-e enormousflexibility,which is both a strength
and a lveakness in the program as you try to make the
kind of changes that are most appropriate for your
communities. Through vour networks, the power and
cohesion vou are developing, you can effect change,
through your effective ad\,ocacy. I would suggest, as a
follo\+up to this conference, and ma),be this is alread)
planned. that you debrief your State h4edicaid people
about the kinds of things that you discussed and that
came out of this conference.

  iYe had a handout here: it rvas a one-page informa-
tion sheet about Medicaid, and on the flip side was a list of
all the regional off%zes for the Health Care Financing
.\dministration and the people there whom we have
designated to be responsible for maternal and child
health issues. Those people are available to you to help
vou to approach and access the system. Also, we have a
\vonderfully knowledgeable person, Bill Hiscock, whowill
be more than willing and eager to answer your questions.

  In terms ofyour quesCons, `M%at are you going to
do with these recommendations and all the time that
we've spent and the heart-felt feeling thatwe have about
changes that need to be made?" I have found this
enormously hetpfttt and also rejuvenating in terms of
my commitment in trying to make some of these things
happen, clarifying policies in what Medicaid will and
will not cover and in transportation, and making sure
that States are implementing the child health screening
service appropriately. So, for that I want to thank you.
I wish you much success when you return to your States
and discuss at that leyel the things that vou have disco\-
ered or he:i~-cl.


I accepted a call from Dr. Novello last evening, and I will
tell you I'm glad I came. I'm glad I accepted, and it is a
real l)lcasut-e to be here.  I. too, am a parent. \,I!
youngest is graduating front high school this year, but I
ant also an expectant grandparent; I don't have a
picture yet, but I have a sonogram, if you'd like to see
that. We're anxiously awaiting that. I've been involved
in the activities of all three of our children in the
schools, in the curriculum council, and in the PTA, and
Ijust want to say, keep LIP what you are doing.

  I'm here not only because I'm a parent. You're
probably saying, "M'hat the heck does Social Securit!
have to do with kids?" Well, most people think of Social
Security as a retirement program. And we are, I think,
avery successful retirement program. M'e have a budget
of o\ (`1 S3OO billion, and we pay 40 million checks ever\
month on titne-we've done that for tnore than 31
years. We have 1,331 offices around the county, where
I assutne you all getve?good sell-ice \chen you go there.
We have people who sewe you with compassion and
efficient)-. \Ve't-e proud ofthat. But many people dott`t
realize that we at Social Security also have a great cleal to
do with children. Evet-\ month. we pa! more than Sl
billion to more than 3 ntillion children under one ofthc
Social Security programs because, in addition to retire-
ment, Social Security has a sunivor's program and a
disabilit!, program. We pay children of retired loot-kers,
children of disabled workers, children who are thent-
selves disabled, and children lvhose parents are de-
ceased and where there is a need for income. So. even
month we do pay 3 million kids more than Sl billion.

  Let me speak for a moment about some of the
things that we have done in response to the questions
that have been raised here. First, in terms of access, a
few years ago Social Security installed an 800 telephone
number, toll free, nationwide, 12 hours, from 7 a.m. to
7 p.m.. so that you can call us frotn anywhere in the
county. You'll get someone who will help you, includ-
ing bilingual help. If you need a referral, we can refer
from there.  We're talking about Social Security

3

"We are your servants here;.%&are
here to help you."

business, generally. We can't refer you for everything,
hut we will help you if you call us on that 800 number.
1Ve can make an appointment for you in one of the
offices ifyou need to cotne into the office. We're trying
to bring that service to whet-e people can access it from
their home, if the!. need it.

  Second, I lvould mention the progratn that we
aclmittister called SSI, Supplemental Security Income.
It reaches another 4 or 3 million eligible people. Cotn-
missioner King lauttched an SSI Outreach Program.
M'e recognize that we in government cannot do this
alone. \Ve cattttot find the people who might be
eligible for this program and who have a needs base
there. But Jve kttow thatyu in the cotnmunity do know
about people, so we'1.e begun an outreach campaign in
all of our local officeslvhere we tt? to educate those who
at-e inlwlved in the community to help us find those
~vho may be eligible for the program. It's been \ety'
successful, and we've had a `LO percent increase in
applications in both of the last 2 years, and we are
continuing to forge those partnerships with commu-
nity organizations. M'e need your help, and we'd be
glad to work with you in any of your organizations in
helping to find persons who may be eligible for SSI.

  Also in the last 2 pears, we have launched a special
program for childrett with disabilities who may be

SO Parents Speak Out for America's Children


eligible for SSI. Some of you may have heard of the
Zebley court case. In that situation, we've developed a
whole new procedure for determining disability in
children. \Ve've worked with pediatricians, school so-
cial workers, and others to define what disability means
in a child. We've had a lot of help from the Public
Health Service, and we've had a lot of input from
community groups. During the last year and a half,
\ve'ye taken 450,000 applications from children with
disabilities, and we've increased the nutnber of persons
receiving those beneftts from about 200,000 to more
than 400,000.
  You mentioned one-stop shopping. Meorkingwith
our colleagues in agencies represented here, we've
begun to integrate our senices. M'e are locating our
offtceswhenever we can together with other State. local,
and Federal offices that have the same clientele that we
do. Secretary Sulli\~an has launched a program of inte-
gration of senices, and all of us in [the Department of
Health and Human Set-vices] HHS are working closel)
to try to coordinate our service deliveqat the local level.
We do have a standard of service. For the first time, we
have published standards of service for our offices, and
we have just begun receiving public input to that. We
will be modifying that as we go along, and we will be
publishing our goals and how long it should take you to
receive service in a Social Security office. We issue a
Social Security card, for instance, in 10 days now. It used
to take us a month to do that. We have other goals, too.
We are trying to determine what is most important to
the public so that we can put our emphasis in that area.
I think it was Ms. Reeves who said, "What will we do, ifwe
don't like what we hear?" Well, I hope you'll call us, if
you have a problem or a concern about Social Security.
I mentioned the 800 number; if you call that number
and don't get satisfaction, I hope you'll call me. M!
number is 410-965-9000. We are your servants here; we
are here to help you.


5

Commitment of
Our Leaders


Chapter 5

P resident George Bush and prominent members
  of his administration expressed their personal
  commitment to the Healthy Children Ready to

Learn Initiative by attending the Conference and speak-
ing to the participants. President Bush delivered his
keynote address in the afternoon of the first day. In
addition, each day of the Conference began with a
keynote speech given by heads of the cosponsoring
Go\rernment agencies: Secretary of Health and Human
Senices Louis Sullivan: Secretary of Agriculture Ed-
ward Madigan; and Secretary of Education Lamar
Alexander. Roger Porter, Assistant to the President for
Economic and Domestic Policy. also addressed the
participants. This section contains their remarks.'

George H. Bush
President of the United States

M ight I just say at the beginning of these brief
     remarks that I am \`en proud of Lou Sullivan
     and what he's doing as Secretan of Health

and Human Senices. He's doing a superbjob, and we all
are grateful to him. And let me just szay it's a pleasure to
be here today to help launch this historic Conference.

  I particularly want to thank our Surgeon General.
Antonia No\Tello. She has inspired people all across the
country with her example and her message. And she
sums it up this way, better than anyone: "All children
have a right to be healthy." Then she say, "LVe need to
speak for those who cannot speak for themselves."

  That's why you've gathered here this week, and
you've come to lead a great movement of parents,
doctors, teachers, public programs, and private enter-
prise-a movement destined to transform America.
Here's our goal: By the year 2000, e\-eq,American child
will start school healthy and ready to learn. Our success
will provide a lifetime of opportunity for our children.

94 Parents Speak Out for America'\; Children

It will guarantee the health and safety of our families
and neighborhoods, and it will ensure that America
remains the undisputed leader of the world.

  Now, I atn proud that our administration is part of
this movement. In this administration, families come
first. We're proud to join hands with people like Trish
Solomon Thomas, who has come from New Mexico to
be here this afternoon. She has hvo children, both of

                   `_
                  :--
                  ,.:      
                 _
                 --        <
                                       _.
          _ : : :         : Y----- ;I.;ed
"P&&ts are a ~child's fi&~t6a~#&,
offering: the love and q&-itual
nourishment that no gkernment
program citn ever hope &provide."
                               -_

_--
  
__


._ -.

them ivith special health needs. She perfectly expressed
the spirit of our movement lvhen she said, "I used to be
shy, but I had to learn to stand up for my kids." And
that's why rve't-e here, to stand up for our kids. We will
not let them dol\n. Our movement draws its strength
from Trish and the millions of parents like her. The title
of this Conference says it all: "Healthy Children Read)
to Learn: The Critical Role of Parents." Parents are a
child's first teachers, offering the love and spiritual
nourishment that no government program can ever
hope to provide.

  If I can brag forjust a minute here toda!,, you may
know of Barbara's work promoting literacy. I'm \Te?
proud of her. She wants to help parents understandjust
how important it is to read to their kids. When parents
read aloud to their young ones, they open their children


to the jovofa largerlvorld: thev teach the self-aswrance
    
and curiosit\ that comes ft-om teat-ning. Rarbara asked
me to extend her best wishes. She's now on a leartling
program, an education program right this minute. in
the State of' Mississippi.

  Our movement instills the habits of good health:
wholesome nutrition, sound hygiene, and profecti\.e mea-
sures like eat-l~imn~tmi~ation. Parents know that teat-tting
and health are tlvo sides of thr cante coin. .-\gain. parcnts.
families, and comn~rtt~ities at-e the key. But go\wttttwttt
can help and must help. Last June, fill- tw11pk. Dr.
Stilliwn and I, with able advice from Dr. So\yllo. took
steps to etiwre that no .~merican child i5 at risk fi-ant
deadh, diseases like polio. diphtheria, and tnw4c~. \2't
lauticht~d an itiitiati\.c to wpport childt~ood itiitiitttti/a-
tions, esprcialh- itiitiimni~ation~ for kid5 in the earl\ ~wr4
oflife. So!\,, that's a crucial step to\fitrrl tiiretittgout.go;tl.
I'm proud we've been able to help. Since 19tiX. \ve'\.v
more than tripled thr dollars for Federal itntltttnir~ttiotl
efforts, ft-om SW million to $29'7 million for 1 !W.

  On Friday. Dr. Sullivan and the Surgeon General
and I were out in San Diego, and we had the privilege of
visiting Logan Heights Family Health <:enter to see
firsthand the benefits of this initiative. M'e spoke with
pawnts and cotntnunit~- leaders, and ever\- one of them
stressed the importance of early immunization in pre-
\wltingillne\s. Logan Heightsis. one ofmany, I'msure.
a perfect esample of rrhat can he done if concerned
itttli\-iduals set their minds to it. The Centerwas founded
1~. a \\.ondet-f'ttl ~voman named Laura Rodriguez, who's
brcotne one` of our administration's Points of Light,
helping others and setting an exatnple in the process.
I.aura MN a nerd, and \vith hard lvork and dedication,
4te rolled up her slee~rs and did wmething about it.
I.ogan Heights now setl.er 7.3.000 patients a year. So 1
~a!`. "Thank God fat- people like Laura. She's an ex-
ampk for all of us." There are many, many other
esampl~s right here in this room.

  For those kids\vho need a head start in preparing for
school, i\`e've made sure that the!`11 get it. In the last 3
J vat-s, we have almost doubled the fttnding for Head Start


progrmts. and this ytr. I ha1.e l~roposed thca Iat-gtw sittgle
increase in Head Start's ltistoty: SW0 million. Thi\vear's

increase Ivill ensure that 1.57,000 more kids1vill be able to
start school ready to learn. Head Start hringschildrctt and
parents into the classroom and into the lrarnitig pt-ocrsr.
Head Start ~vorks because parents take the 1c;td. 1itu ma!
not kno\v this, but \olunte~t-s in Head Start outnumber

"Our great challenge, then, is to keep
what works in our system, and then
reform what doesn't work."



paid staff` by eight to one.  Head Stat-t \\wks because
people care. \Ve't-e making 5ure it continue\ to MX)I-~. If
it's good for America`s kids, it's good for Xmerica.

  These are important steps. Rut there'\ mow to
do. 1Ve must address the larger issues of Xmet-ican
health care. Last week. I proposed a four-point plan to
dojust that. Eve?- American family must have access to
affordable, high-quality health care.

  I don't need to tell you that the Amet-icatt health
care systetn has probletns.  The crisis has probabl!
touched many of you right here in this room. Right
now. more than 8 million children go without health
insrtrance because skyrocketing costs have placed co\:
et-age beyond the reach of their parents. And even
parents\vhoare co~eredwor~aboutlosing theirfamily's
insurance if they move on to a different job or, worse
still, lose the ,job they have. You shouldn't have to live

\vitli this kind ol` uncertaitttv.  No American f&nil\
should. and tttv proposal lvould put an end to that.

  1'et I think \ve should keep one thing in mind. It's
impot-tant to rrtnetnber that, for all its problems, our
health care system still provides the best health care in the
\vorld. That's [VII\- people ft-om all over the world come
here seeking better care. Most often they're ?ing to
rscapc health care systetns in w,hich the go\`ernment
dictates how much care you'll get and what kind you'll get
and Ivhen you'll get it. In America. that's wiacceptable.

  Out- great challenge, then, is to keep what works in
our system. and then reform what doesn't work. We
must tnaintain a maximum freedom of choice and the
highesr qualit!, care. At the Same time, we must tnake
sure that our children have access to health cat-e their
parents can afford, sick or healthy. rich or poor.

  That's Ivhat this four-point plan does, and let me
,jusI brieIlL- spell it out for you. First, I want to make
health care mow affordable and accessible. I want a
SS.`7.50 tar credit for lolv-income families to help them
INI\ health insur;tnce: for middle-income families, I've
1~1~~1~ored ;I tax dedrtction for the Same atnount. Poor
people, those \vho don't file taxes, also Mould be COY-
errtl under this plan.

   Seco~td. to cut costs, 1t.e will tnake health cat-e
more ef`ficicvt. The math is simple: The larger the
group beittg cowred, the louver the cost pet- individual.
So i\.e'\e proposed health insurance net\vorks that bring
compattirs together to cut administrative costs and
make ittwrance affordable for \\-orking parents.

   .-\nd third, r1.e mttst cut ottt \vaste and abuse. M'e
can start lvith medical malpractice lawsuits that drive up
the cost of care for evevone. A doctor pestered with
frivolous litigation ends up passing his legal costs right
along to !~tu. thy Xmerican people, and right along to
the patient. \Vhen yougo to thedoctor, Idon'twantyou
to have to pay a la\zTer, too. Just pay the doctor.

  Finally, \ve must slow the spiraling costs of Federal
health programs. These costs are rising far beyond the
rate of inflation, and that only endangers important
benefits while making less money available for more
pressing needs.

96  Parents Speak Out for America's Children


   Thcrc it is. .-\ comntot~-wnw rrfi)t-tn that lvill
nlaintain highqualit\. care, cut cost>. cnsurt tnasinttm
fi-cedom of choice, atid give e\.et7.fatttil~.-rich or poet`.
5icE, 01` healthy-access to IlPaltll cat-e. I kllO\\ how
important thi5 is. patxicttlarl~ for parrnts !vho lta\v
childreti with special needs. \I\- plan \vill cw4t1rc tltat
wtt can change jobs \vithout etitlatt~c`riti~ the health
insurance on which 10111 cltild d~.pettds. \\`c't.c brtiltl-
ing on our sv\teni'\ \tt.etlglhs.  \\.r't-c ;i\oidiiig tht
pitfitlls of`tiatiottali~~tl care. tllc kind that propIt. fi.otn
all over the I\-orltl cotiie to .\tiirt~ica to ~w;tpt'.

  .-Ul these appl-oat-lirs f'ot. Inec,titig oui- goal of
healthy children wads- to 1t';irii must build 011 ;I Ix~aic
truth, that, in thiscotIttti3. f';itiiilics COIIIC first. (;o\ct-tt-
tllrllt l~"ogl-allls that cnxTtaLe tl1r I'l* `~rlitfitl tx~l~ of' l'attti-

liesa~~tlcotniiiut~iti~s.tl~It~ tltvitt thr. fi-cctlotII of`c~ltoicx~.
ot- hind tlivtii itp in t-cd tape ;II`C ~itirpl\~ ttttac~cept;tblc.

  Our tiio~x~nietit i\ about sttxwgth~iiitt~ f':ttttilitx
O\YI- the next fc-\vdms. I'm tolrl\-oti~~illco~ttittt~t~;~~t-that
national dialog. slim-e it~fotm~atiott. esplotx~ nc'xv i&a\.
and then r~tiwti to u)t~r c.otntiiutiitit.~ to lead thv good
fight. Your coniniittneut is an in+t-atiott. and I thattk
T~LI for inviting nie to get a f'wlitig of` it fit-sthatid.
  May God bless all O~`\YNI. Thank you al1 and tna>
God bless America. Thank you \-et-!. vu-\- mt~ch.

Louis W. Sullivan, M.D.
Secreta~r~ of Health and Hurnnn Services

G ood morning. It is a sincere pleasttrr to b~elconte
    eveqm~te to the "Health!, ~~hildren Ready to
     Lxarn" Cotiferencr. I'd like to take a nmnent to

commend m)- colleague, Dr. Antonia Novello. wtw has ken
working diligvntl~~ during her tenttrt' at the Ikpartnwnt of
Health and Humat~ Set~ices to improw the health and wzll-
being of America's children. This vu?. timel! and itnporta~~t
Conference is the culmination of' 18 niontl~s of planning
among the Office of the Surgeon Gmetxl, the Departtn~nt.s
c)f.Agricultttrr and Education. the Sadonal Go~xm~ors AwF
ciation. and so tnanv others. I ant confident that this C:onfrr-
encc' \\ill pIa\ ail cwtwtial role in 0111` dt'l~tt-ttltc'llt-\\idt, t%ftc )rt
to itnpt-ow school waditi~ss.

  J'ou know it is not often that we policytnakers in
\Vashington stop to conf&- with the real experts about
the challenges fxing,1nwtican children. But todaywe
arc. Today. 1t.e arc convening parents from evey State
in our Sation. Together with educators and health
pt-of'+ssionals ft-om the front lines, \ce can network,
share promising progran~s. and strategire about holvlve
c;ut tnt'et thr President'\ first Sational Education Goal
tliat "b!. the x.eat- 2000 all children in America will start
\c11001 1xYid\ to learIl."

  .-\s \ve all knojv, ;I good beginning is often the lie!
to wcct'ss. This is v\pt,cially true tvhen we speak of
cltiltlt~cn. .\s parettts. health cat-e professionals, psy-
cltologict~. edttcators, and othet-s who u~~t-li with chil-
dtwtt uill atteat. the rxpetiences of childhood shape the
~otirsi(~ of` ;I lifetime. This sentiment leas beautifull>
c;tptrtrtd b\~,john \lilton, \vhow-ate: "Childhood sholvs
thr. tttan as mot-nitlg sho\vs the day."


   M'hat determines whether a childhood is a beau-
tiful sunrise in wartn tones of amber and crimson, or a
grim, colorless dawn? First and foremost, a child needs
to be secure in the love of his or her parents. h father
who reads to his child each night before bed, or a
mother who proudly displays crayon masterpieces on
the refrigerator, is real])- laying the groundwork for a
positive school experience. In addition, a warm, color-
ful childhood is a healthv childhood. Children's health
and their ability to learn are mutually dependent. Be-
ing ready to learn depends upon a child haling enough
to eat, being protected frotn preventable diseases, grow-
ing up free from environmental pollutants, and having
access to health care. Helping parents to provide a
healthy childhood for their children is a central part of
the mission of my Department.

  In his fiscal year 1993 budget, President Bush has
provided us a blueprint for action.  The President's
budget proposal has three areas of emphasis: First, j\e
must imrest in children; second, we must focus on preyen-
tion; and third, programs must empower parents.

Investing in Children

Investing in children is sitnpl!, good health care polic!.
The time and resources we devote to children now will
pay continuous dividends in the future in the form of
healthier and tnore productive citizens. In recognition

.-
_
:

"I tr@j%&%zv~ &at th&amiIy is redly
the fi&vd best department ofl&lth
and humAn.services. And:I"d like to
say, as well, &at parents axe a child's
first and -best .d-epartment of
education,?            _ __

r

ofthis tact, the Pt-esidrnt's b@get proposes to increase
im.estmettt progt-ams serving children to $100 billion,
up from S60 billion in 1989.

Healthy Start

The first few years of life, beginning in the womb, are
the most crucial period of child development. There-
fore, if we truly desire to invest in the next generation,
we must begin before the child is even born. We must
begin bv making sure every mother receives early,
quality prenatal care. Overall, nearly 25 percent of all
women-and nearly 40 percent of Black and Hispanic
women-do not receive prenatal care in their first
trimester of pregnancy.

  Lack of prenatal care is a contributing factor to
this Nation's disgraceful it&ant mortality t-ate. Despite
spending tnore on health cat-e than an): other nation,
the United States retnains 23th among nations in the
rate ofsur~i~A of'infants. Each \`eat-, 40,000 American
babies do not 1il.e to celebrate their first birthday.
Black babies art' more than twice as likely as white
babies to die.

  The President and I ha1.e made infant mortality a
national priorit\ by developing a new infant health
initiative, Health\ Start. Our strategy is to concentrate
resourcw in 1 .i contn~ut~ities Ivith stubbornly high in-
fant mortalit!. rates.  Each community is given the
flesibility to create a mix of setTices tailored to the
tireds of their population. \Ve are requesting 5143
million to prwide these 1.5 communities with the re-
sources necessary to full!, implement their detailed
strategies for reducing infant mortality rates by at least
50 percent ovet- a .5-!,eat- period.  We will use the
kno\vledge gained from these demonstration prqjects
as a model for other communities across the Nation.

Focus on Prevention

The President's budget also will focus resources and
attention on pre\,entive health programs. Common
sense argues that it is better to invest in prevention and
screening programs than to Ivait until the advanced
stages of disease. when treatment is more cotnplicated
and more costly.

98 Parrnta Speak Out for America's Children


"It is fto surprise that our most suc-
cessful ~pfugrams for children-like
Head Start-are built upon direct
parental involvement."

Immunizations

Childhood immunizations are a~nong the most cost-
effective prevention acti\,ities.  Z\ Sl investment in
measles-mumps-rubella Gwcine ma\- return S 11 in
avoided medical care costs. M'e can be proud of the fact
that 97 percent of American children entering school
are immunized. Ho\\.ever, to be fully protected, chil-
dren need to be properly immmlized by the time the!
are 2 years old. Our rates among preschoolers are much
lower, and in some inner-city areas, the immunization
rate among 2 year olds is an abysmal 20 percent.

  That is whv the President has requested $.?2 mil-
lion for our immunization activities-an increase of 138
percent since 1989. My Department will use this in-
crease to target those children most at risk. These
dollars will translate into 6.7 million polio vaccinations,
4.1 million measles-mumps-rubella vaccinations, and
2.6 million hepatitis B vaccinations.

LeadPoisoning

Lead poisoning, the most common environmental dis-
ease ofyoung children, is another preventable disease. As
many as 3 to 4 million American children under 6 years
old may have lead levels in the blood high enough to cause
developmental dclal.5. learning disabilities. heha\ioral
problems, decreases in intelligence, and tA\.en death.

  Low-income, minority children growing up in ur-
ban areasare most at risk ofhaving dangerously high levels
of lead in their blood. The President's budget requests
S40 million, a 90 percent increase, for CDC Lead Poison-
ing Prevention Grants. These grantswill support about 30
statewide lead poisoning screening programs.

Empower Parents

The third emphasisofthe President's budget is thecritical
role of parents and the need to support programs that
empower pal-ents. I trul!. believe that the family is real])
the first and best department of health and human
sel-\ices. LAnd I'd like to say, as well, that parents are a
child's first and best department of education.

  Educators often speak of the "hidden curriculum
of the home" to describe the important lessonswe learn
during our first few years of life. We learn that our
parents love us vel? much, and that gives us a sense of
securitv. IZ'e learn how to share, and we learn right from
left and right from wrong.

  These are not eas!' lessons to teach. And all too
often this learning does not occur because parents
cannot, or do not, attend to the needs of their children.
It is no surprise that our most successful programs for
children--like Head Start-are built upon direct pa-
rental involvement.

Head Start

Head Start has won the confidence of the American
people. It is known as a program that works and a
program that is worthy of our tax dollars. Many of you
in the audience are familiar with Head Start; some ma!
even seme on parent councils, which guide the opera-
tions of the individual centers.

   President Bush, a firm believer in the value of Head
Start, has proposed the largest single-year funding in-
crease in the histoy of Head Start. The $600 million he
has requested will seme an estimated 157,000 additional
children in 1993. These additions would mean that
fUnding for Head Start has more than doubled since
President Bush came to office.  This unprecedented
incrraae in He;ltl Start suppol-ts participation of`:ill vligit)lc
;uld iljtel.c4tc(l cti4;ld\;Itll`l~(.(l chiltllc'll 101' OII<' x(`;Il..


The President's Health Care Proposal

In addition to targeted intet>.entions such as Head
Start and Healthy Start, the President annout~ced last
week his health care reform proposal.  Under the
President's plan, the middle class will get help to pa!
for health care through a new income tax cleduction.
For poor families, the plan guarantees access to health
care through another new feature: a health insurance
credit. In combination, these tax provisions Fuill help
more than 90 million ;\mericans and covet- 93 percent
of the uninsured.

  This morning I've outlined the tremendous ne\\
resources that the President wants to make available for
children. But more money alone is not enough. The
critical element of any initiative to help children is par-
ents. Unfortunately. for reasons ranging from parental
exhaustion to preoccupation with careers. children toda\
spend 40 percent less time rvith their parents than ther.did
in 1963-an average of only 17 hours a \\,eek! To put that
figure in perspective. Xmerican children spend an aver-
age of 2.5 hours watching television each l\,eek.

  I'm encouraged to see so many parents alit1 child
experts gathered for this Gmference. O\,er the next
few days, you will have the opportunit!, to USC ~~~nr
combined expertise to I~OIY this Sation to\vard the
goal that all children lvill begin school read\- to learn.
To borrow again f?om Milton, !-on jvill ha\.e the oppor-
twnity to make childhood a \varm and radiant sunt-i$e.
ushering in a day of golden hope.

  Thank you all. Godspeed to all of the Health!-
Children Ready to Learn participants.

Edward Madigan
Secretary of Agm'culture

N utrition is basic. hll things can be possible fol
    a child who is well fed: \er). little is possible to1
    a child, or a pregnant mother, or anyone fat
that matter, who doesn't get the nutritious foods \ve all
need to grow, to learn, and to excel. It's ourjob to get
that information to you and before the public and into
e\,eryday practice. There are 64 million children in the

United States t&a!,, and all of them share this need.
That's why we're here this morning.

  The Prrsident recognized the importance of a
strong nutrition foundation in his education initiative.
The first of his six National Education Goals is that "B\

the \`ear %M~. all children in Xmerica will start school

ready to learn."

  To achieve this, we have to ensure that they re-
ceive the nutrition thev need for healthv minds and
bodies. That responsibility begins before children are
born. M'orking lvith mothers, we must ensure that the
number of low-birthweight babies is significantly re-
duced through good prenatal care.

  Xlthoughwe are investing large amounts ofmoney
alld effort to help, it's the parents of children in these
programs \vho have the primary role to play in their
care and feeding. One of our best progratns for
reaching both children and the parents of children at
risk is the Supplemental Food Program for M'omen.
Infants, and (:hilclren. or M'IC. This program provides
suI~plrn~rntal food and nutrition education to low-
incomr pregllant, postpartum. and hrrastfeeding
\vomen: infants: ant1 voung children-all at nutritional
risk. \\`I(: scr~.es OIIC in three babies born e\-etT' year.
                                      I
That's about .!.?I million participants this month alone.
;\nd our highest priorit~~is 101\.-income pregnant \vomen
and their infiints. LShat'.s more, \17C has become a
gatr\\.a\.toothergo\.ei-ilmeiit ser\.iccs, especiallvhealth
carr. Through \!I(:, pregnant women are learning
about and obtaining health selyices they need. L.ocal
1VI(: agencies refer applicants to Sledicaid if it's like11
thw'rt` eligible.

  \2'1<: is an acljunct to health care that participants
recei\.e at local health clinics. For example, M?C per-
sonnel promote hreastfeeding among program partici-
pants, coordinate with State and Federal immunization
programs, and provide alcohol and drug abuse preven-
tion education and referrals.

   \2'1<1 is cost-effective.  X major study done in
1987-88 in five States shon-ed that Medicaid-eligible
pregnant women who participate in MTC do indeed
have healthier babies than low-income women who do

100 Parents Speak Out for America's Children


not participate. EWIT dollar spent on prenatal \\`I(:
care was associated uith a \ledicaid u\-ing\ of`bet~~reir
S1.92 and S1.7.i for ne~vborn~ and their mothers.

  Last !`ear, the President highlighted \\`I(: a5 a major
priority to ensure that chilclren enter scl~ooI health\, and
ready to learn. He requested the largest budget illcrease
for \47C of an!' president. An even larger increase, S210
million in 1993, will enable M'IC to reach .?.4 millioil
women, infants, and children each mwth. \`irtuall\- al)
lowincome pregi~arit\~onien and infnntsuho ;iw eligible
are enrolled in the program. This 2-year effol-t w-ilill extend
U?C benefits to nParl!- X0,000 more people.

  This )~ear, President Bush is requesting a SSOO
million increase for the Head Start Program. Herr again,
we at the Department of Agriculture \vork together \lith
another Federal program. Head Start prokles education
services under the Department of Health and Human
Senices; the Department of .\gricnlture prw-ides the
meals and snacks.

  Our counterpart program is the Child and ,\tlult
Care Food PI~o~I-~I~. lvhich concentl-atcs on prtwhool
children. ages three to five. in ilon-i-esitleiitial cliildcarc~
centers antI famih tlaw 211-c homrs. ~rod~t~, tht* p~~~~1~;1111 k
             
operating iiationuide. iii 170.000 clriltlc;u-e c~`iltcw ;iiltl

daycare homes. It's been a fast growing program, and
many of your preschoolers participate. Next year, we
propose to spend $1.17 billion on the Child and Adult
Care Food Program. LVe expect to sene 100 million
additional meals in 1993. due in part to the continued
expansion of Head Start programs.

  Of course. the program hour children probably
participate in \\,hen they enter kindergarten or first
grade is thr Sational School Lunch Program. Through
thi4 program. schools wr1.e almost 23 million lunches
each school da!- in virtuallv all the public schools and in
most of'thr priLite schools. Half of those are free or at
;I ~~edr~cetl price. Our efforts to change this program are
aimed at fi)cusing 011r limited resources to those who
ntwl them the most, without sacrificing the program
beliefit\ to all of`oiii- Sdtion's chilclreii.

  Onw again this war, thr Bush .~dniinistration is
proposing a rcwucturing of the reimbursement for the
SCIIOOI I.unch Program. Our proposal would reduce the
cost liw rrducecl-price lunches IX a quarter, so that a
~tutlent in that categol-\ could get a nutritious meal for no
more than 13 cents. For reduced-price school breakfasts,
the cost ~oulcl be reduced to a dime. ;2lore well-off
children would find their per-meal costs increasing b!
S.06. a small price for such an extended benefit to those
truh in need. This proposal would enable us to reach
~~N.000 more children ~.ho are currently eligible to pur-
chase meals at ;I reduced price but are not participating.

  This year, we`ve made it much simpler for schools
to establish a child's eligibility for free school lunches
and breakfasts. M'e'\e started a direct certification

sv$tem under which schools now communicate direct11
lvith local welfarr offices. If a child comes from a farnil!
receiving Food Stamps or benefits under the Aid to
Families with Dependent Children Program (;\FDC),
the child ~tlav receive free school lunches and break-
fasts. Parents are not rtquired to submit an application.
;\s a result. schools report that the) `I-C sell-kg more free
I~tnches to eligible children than ever before. We don't
let kno\v how lnan\.morc are bencflting. but indications
at`<' the number is substantial.


the 1990 Federal Dietarv Guidelines for X1 .%nericans.
L%mong other recommendations, these guidelines sug-
gest that children and adults eat a diet in which 30 percent
or less of the calories come from fat. U'e're working to
achieve that goal in the school hmch and breakfast pro-
grams, and we're making progress. To assist in this effort,
we're conducting demonstrations in California, Colo-
rado, Louisiana, Ohio, and Tennessee to test how schools
can modi@ their menus to reduce fat, salt, and sugar and
still keep students eating school lunches. M'e are testing
or have tested four different types of low-fat hamburgers
in six States last year, and the comments coming back
from the schools were very' favorable.

  In a few months. we will issue a publication and
instructional videos to give cafeteria workers additional
information they need to offer meals that meet the
dietary guidelines. The new dietal?, guidance Ivill be
provided to more than 27.5,OOO child nutrition program
operators-some of you are here today-in more than
90,000 school districts across the count?. I have prom-
ised to provide schools with the tools they need to
comply with the dietary guidelines by 1994. Our goal is
to have at least 90 percent of all lunch and breakf%+t
menus in line with the dietan guidelines 131 the vear
2000. I'd like to do a little hettcl- than that, and sooner.

  Some of you are parents of children ~&o Ivill be
participating in the School Lunch Program. and IYHI
need to be involved with vour school and its l~u~cl~
program. Just as Head Start o\veh much of its success to
parent involvement, the same holds true for school
lunch. Our most successful school lunch programs are
those where parents are involved.

   Besides school lunch, the School Breakfast Pro-
gram senes almost five million children daily. Xnd
about 80 percent of school breakfasts are served free.

  The largest of our food assistance programs is Food
Stamps. Eighty percent of those benefits go to families
with children and about half of all Food Stamp partici-
pants are children. More than 12 million children receive
Food Stamps each month. Beyond that, three out of four
households with children also receive benefits from at
least one other food assistance program. In 1993, the
Department of .Agriculture expects to spend almost $23

billion on the Food Stamp Program alone. Food Stamps
are available for eve7 needy person who meets the quali-
fications and enrolls in the program.

anyone for #&at matter, F&O doesn't

  There are, of course, other food assistance pro-
grams. During thv summer months, the Department of
,\griculture provides meals for children in low-income
neighborhoods. In 1993. this program will provide
about 100 million meals. M'e also distribute food pack-
ages and commodities. Food packages are distributed
on Indian resell.ations and to the homeless. 1Ve also
have programs that distribute bulk commodities to
orphanages, hospitals, soup kitchens, food banks, and
meals on lvheels.

  The food assistance programs do a vey good job
of providing needy people with food. But they need to
do mol-e than that. MTe must make use of these pro-
grams to teach people about the critical relationship
between diet and health. M'e need to do more than
provide good food. `IZ'e need to provide food that is
good for them in the right mix. We need to help them
understand the difference.

  The Nutrition Education and Training Program,
known as NET, supports nutrition education for school
food senice personnel, teachers, and students. NET
has done a good.job in the Nation's schools. But some
areas deserve more attention-such as educating

102  Parents Speak Out for America's Children


preschoolers in the Child and r\dult Care Food Pro-

gram.  The President's 1993 budget requests a 3)
percent increase in SET fmnds next year. These new
funds will be used to expand nutrition education and
training to childcare providers 1~110 seI1.e vex?- young
children. \.lre will develop preschool curricula as \vell as
materials that show care provide,-s how to ,etTe saCe and
nutritious meals and snacks.

   1 want to mention the Sational Food Sellice
Management Institute. sponsored by the Department
of Agriculture. The Institute began operation\ at the
University of Mississippi in 1990. It helps ~hool lunch
operators impro1.e both the qualin. of meals and thy
operation of child ntltt-itioll progr;uns. \Vr cqwct the
Institute to be a \aluable source of con5istwt training
and research-based information.

  From the beginning, MIC has ~natle nuts-ition edu-
cation an integral part of the program. In 1993. 1t.t' \\ill
spend $1 1.5 million on nutrition education to help par-
ents learn about the right foods to ~17~ their children.

  To further improve the nutritional status of the
neediest MT<: participants, NY have requested S 12.3
million for our Extension Senice to provide intensive
nutrition training for the most need\,. \\`r lvill use these
funds to serve 30,000 new WIG participants, in addition
to the 9 1,000 now sewed through the Expanded Food
and Nutrition Education Program.

  The President's budget also proposes S4.5 million
in State grants to develop and distribute training and
nutrition education materials for hard-to-reach adults.
The objective here is a nutrition message sensitive to
income, educational levels, and cultural preferences.

   The breadth of our food assistance efforts affects
many people. In total, this month, we'll reach over 50
million Americans. This effort begins with informed,
engaged parents who are taking an active role in the
programs that affect their children. I urge you to work
locally to see that these programs succeed. Evenone
who can and should be enrolled in these programs
needs to be enrolled. Thev are among the most success-
ful and helpful in government. In many cases, it takes
you to make them work. Keep at it. Thc~-e arc 63 million
children depending on YOU and on mc. 11'~ can ndv

a difference in their future. It's our future as well. The
stakes are too high for us not to succeed.
  1 thank !ULI, and God bless you.

Lamar Alexander
Secretary of Ed,ucation

C an yw imagine a more irrepressible Surgeon
     General than Antonia Novello? She called me
    a few months ago, and then she came by to see

me. I said, "SON., I Ivill be glad to come see you," and she
said, "Oh. no. I Ivant to come see you." So she came over
to see rue, and she told me about her ideas for this

Conference and ho~v she {canted to focus the idea of

healths children Tvith the first Sational Education
Goal-chilclren ready to learn-and how she wanted
the \-arious Departments, those of us in the Federal
Government who \vork in these areas, to join in and to
work Jvith the Governors. But more than anything else,
we wanted to invite and bring together people from
arourlcl the country, not all of whom were experts in
working with the Government every day, but people
who were ad\,ocates. Some are experts in working with
the Government even- day, but many are not, and I'm
sure it's been a vet-y free-flowing, spontaneous, useful 2
or 3 days. I got the sense of thatjust this morning in the
few moments I talked with you.

  1 think it's good to have conferences when you
don't know exactly what the result will be; when you
have people who aren't programmed necessarily; when
~OLI have an opportunity to heat- a lot of different
people and learn some things you might not have
known before and consider some things that might be
different than things you considered before. 1 think in
an opportmnit\ like that you can make more of a
contribution than you can in something that is staged.

  I know that many of`you worked late last night with
~YNII- thinking and vow ideas. and you will probably be
~vondel-ing, "Nowlvhat? Mhat about all of that work. all of
that enthusiasnl. all of that talk-%\iIl it make an\
(liff~l.yllc.~~" \j-rll. t)lt. ;I,~SIVC*' is, t)f~(`t)t~rse it \\ill IllahC' ;I


diffcrelicr. \i)uought tog:et asrnscof that fi-on] thvcroud
that ~OLI'\Y attracted hrre in the last fev cla)~ The
President's beeii here: lots of people ha\v been here.
They're pa!ing attention, I think, to your presence. So
your ideaswill make their \\a! back into Government. into
the States that !`ou come from, and hopefully, and ma\be
most importantl!., which islvhat I'd like to talk about, back
to the communities in lvhich yo11 live.
   M'e like to call them the America `LO00 communi-
ties. You ma\` call them Ivhatevel- !-ou \vould like, but in
the end, that's lvhere the results really make a differ-
ence. I get a lot of letter\ from children. since \ve'rr
talking about children, and teachers encourage them
to write me.  I like to see that, because so often OUI
children today end up sittin, u around ~\.atching: televi-
sion. which is sort of a one-\\-a! thing, and they're not
communicating and talking and having conversations
as much as they should.

  The President talked about .\merica 2000 and a
national examination system. This is a \.ollultal?-s!.stelrl.
Yo'ou may be in my hometown in MeryTille, TS, and JOLI
really wonder, "M'ell, I read all this stuff in the paper.
Are our kids here learning math in the fourth grade to
a world-class standard? I'd like to know\-." \\hat the
President u'ants to do is to make sure lvc' create wmc
standards in math, sciencr. English. histon.. and grog-
raphy. then a series of\vhat he calls ;\merican ;Ichieve-
ment tests that 11-e can use in ill\. hometo\\ 11 to ans\ver
that question. Then if some kids are and some kids
aren't, at least \vv'll have ail honest atls\ver about it and
\ve can go to \vork on it. Of course. lvhat the President
is suggesting is not more tests, just clifferrnt tests-tests
that might give us a clearer indication. M'e want Ameri-
can schools with Xmerican values for our children, but
we also want them to be able to learn enough and do
enough-all children-to live, work. and compete with
children gro\vingup in Seoul andTai\van and all around
the world.

  1 was the Governor of Tennessee for 8 years, and
after I had been there a~.hile, I figured, ifwejust sort of
get up eveIT day and do our job, we may end tip going
arollnd in circles. \V'e have a philosopher in Tennessee
uamed (:het Atkins \vho pla\s the guitar, and he says

somrthiiig veil' profound: "In this litk !uu have to he
might\- careful where vou aim because you are likely to
get there." LVe talked about it tvith our cabinet in the
State go\.ernment and came up lvith a very short sen-
tence about lvhat we were tying to help our State do.
Soticc- I didn't say "what we were going to do for our
State" because that's not the \vay it ~vorks. That's the "a)
some peoplr thinhit\~~orks, and sometimesyo~l read the
ncv.spapers aiicl people sax-. "I'm going to do this, and
I'm going to do that." That's not the way it works. `Cl'hat
1t.e Ivei-e Ming to do lvas use o~ir positions in golrern-
ment to help people do things for themselves, commu-
uit\. by community. And our goal for our State was to
ha\y healthy children lvho lived in safe and clean
communities and who could go to good schools that
uuuld help them ha1.e a better life and a goodjob. It was
that simple. and\w al\raysstarteclwith healthy children.

104 Parents Speak Out for America'\ Children


   MLI\ wife \vas one of mv educators on this. Gover-
nors real]\- educate themselves in public, if the!.`re
smart. They don't arrive knowing e\-ety.thing: the!,
reallv don't arrive knowing much. So. I learned a lot.
and I thought that one of m\ roles as Gwcrnor Eva\ to
help others learn as I \fls learning. \I\. \vifv f'ormrd a
Health\, <~hilclren 1nitiatix.e and Ivent to ROI-k ovc`i` ;I
period of 6 to 8 years on a number of'thiuga.

  One ofthose things had to do\\ith a\~nhigh infimt
mortality rate lve had in the State and a \wv low level of
prenatal health care. \Ve found that for a relativeh~ small
amount of money lve could take prenatal hralth care
senices, which were available in onlv about 30 of OLW 9.5
counties, and expand them \irtuall\ to ejvn couii~`. It
real]>- took placing priorit\, on it and \kw-king on it and
talking to a lot of people about it and 5pendillg some
monel.. In the ~vtiole State budget, holvever, it \vasn't
much mane\`. 1Ve saw results from that. I ran into

indkiduals, women in Tennessee tolvns, lvho Ivould cotne
up to me and say. "I think your wife ttrlpcd 111:. t,ab!. be
born health!,," because the\, knew that sheers involvtd. It
gave the mothers some awareness of Ichat come of their-
responsibilities might be during the period ofpregnancv,
and it made some difference.

  We found some other things that could be done.
The Healthy Children 1nitiatk.e revealed that may
babies were being born without a pediatrician available
on the first day. They also found it was entire]!. possible
to have one available on the first day, and that it didn't
necessarily cost money. The pediatricians in our Stat?
and our Healthy Children Taskforce got together and
simply agreed that, if a child was born who didn't ha\,e
a pediatrician identified. the hospital, doctors, and
Healthy Children Initiative would designate one so that
babies being born in Tennessee had a doctor. So,just
those two things made a difference.

   I also recall that toward the end of the time 1 was
Governor, the head of the Healthy Children Initiative
and my wife came in and said, "M'e need to do more in
childcare." I said, "`Well, the budget is ah-eady made up
and we don't have anv more monev for thisveal-." I MX
always twing to thiiik of the practical things, 1011 kncnv.
   I
The\, said. "Oh. tllat`s not a problem. \vv'll,ju<t ask the,

corporations in our State to double the number of
childcare spaces that the! provide to their employees."
Sow this lvas -3 or Gyears ago, so it was a modest number.
hut \ve got some major corporations together, the CEOs
[(:hivf Executive Officers], talked to them about it, and
challenged them to double the number of childcare

"The one message I would like to
leave with you today is that tihile-ifs
extremely important what nafional
policy is. . . and while it's very impor-
tant what the State does . . . it is most
important what happens where you
live, in your hometown,"

spaces they provided to their employees. They quad-
rupled the number of childcare spaces they gave to
their employees, and I believe the succeeding Governor
continued that initiative. I make those comments to
~`011 because man\ of vow States, and manv of you are
             
involved in this, know of efforts to expand prenatal
health cat-e. Many of you know of efforts to identif!
doctors for babies from the time they are born. Many of
~OLI know of efforts to encourage employers to provide
childcare opportunities for their emplovees: some of
vou might not mind doing that.

  The one message 1 would like to leave with )-oL~
toda!,is thatwhileit'sextremel~importantwhat national
policy is-that affects thr spending of a lot of money-
and \vhilc it'\ \-rr!. importalIt \\.hat the State does-that
also affects the spv~lding of a lot of inour\.--it is most
illlpol.t;tllt \vli;lt h;kppc'n4 whrrc* J-ou tile. in \()ul'
]lc)jjl~~tc~~\l~. l`lly tl-rltll is. ttlr, tulltl;ilirc~lltal pl~0l~l~~lll tll;lt


you're here about, the fundamental problem that
President Bush's education initiative addresses in the
end, is a matter of parents, families, and communities
taking care ofchildren andputtingapriorit!,on children
as they are growing up.

  It's the greatest challenge that any adult ever
has-that matter of bringing a child healthy and safel)
into the world and helping that child grow up. I think
every child is at risk from before they are born and
continues that way until that person begins to have his
or her own children and for some time after that. Eve?
child is a fragile, tniraculous opportunit\- for success
and potential. The more I see of schools, communities,
and this count?, I think what is really happening is that
we have gotten to be a ye? busy county'. busier than
ever, all of LB working. It seems like our feeling of
responsibilivforourchildren hasdroppedafewnotches.
and we need to move it back up or else we'll be planting
landmines in the desert all over Xmerica, and we'll
never be able to find them all or to take care of them all.

  I think of goal number one e\-er)da>, because it's
part of mp job to help .%merica 2000 communities do
what the President has asked them to do: adopt those
six Sational Education Goals; develop a strateg? in theil
hometown to move toward those goals; and develop a
report card to measure progress toward those goals and
to think about creating a new. break-the-mold .\meri-
can school that really meets the needs of children the
wa\`they are growing up toda!,. Then. I go to California.
and the Governor reminds me that 1 out of 10 hahies
horn in California even; year is a drug baby-hahies born
with some poison in them. They're not all crack babies,
but they are drug habies. There are 250,000 children
horn in California even-year. That's a lot of babies, and
that's an obstacle to learning. Those children have one
strike against them from the day they are born in terms
of their ability to grow up, live and work, and compete
in a world with children from all over the world.

  One of my perceptions is that more money will
help, but there is alot ofFederal money out there, much
of which could be better spent if we could find ways to
organize it better. For example, Jule Sugerman came in
to see us the other day. Man)- of you may know him. He

got buy in the 1960s and really, with some others,
im.ented Head Start-just a little pilot program and
zoom, here it goes, o\rer the last several years. Everyone
is awfully proud of Head Start. He pointed out to us in
the Department of Education that there are now 27
different Federal programs that were available for chil-
drenwho are less than 5 or 6years old and that the major
challenge right now-while he's an advocate for more
money-is spending that money wisely.

  I think of Decatur, Georgia, as a wonderful ex-
ample. There's a school district that, in the early SOS,
had people trying to get out-parents seeking to get
their children in schools in other districts. Today they
are trying to get in. There are two reasons for that: One
reason has to dowith whatgoes on inside the school and
the second reason has to do with what goes on in the
community outside the school, hoth involving children.
Inside, it's a tough school with high standards, teachers
who are responsible for the progress of the children,
and a very strict superintendent. This is a school that
\\,ould have a profile for low achievement scores-it's a
minority district, SO-9.5 percent, rvhere most of the kids
have a chance to have free lunches or free breakfasts.
But in this school they ha\.e among the highest achieve-
ment scores in the school districts in the State.

  Mllat makes the difference? I think it's what goes
on inside the school. The superintendent in this rela-
tivel!~small school district-one high school, one middle
school, and a few, three or four, elementary schools-
has gathered more than $1 million of support from the
communit\. to help the children. He uses the school as
the organizing point to help those children, so the!
don't just turn kids loose in the afternoon at 3:30 p.m.
to go home to an empty house with no support. The)
have everyone from the Boy Scouts to the Girl Scouts to
the local foundation, to the Department of Health and
Human Senices and Department of Education offices.
They've just rounded them all up, and they've taken
that money, energy, and interest, and they are fitting it
with the real needs of those children. They don't
interfere with the school's function of teaching and
learning. I don't think we should; we shouldn't dump
problems on the school that the school is not capable of

106 Parents Speak Out for America's Children


handling. But they do use the school as a center for the
organization of community efforts, which helps the
children become ready for school and stay ready for
school as they grow up.

"Every chilrc@, a fragile, mirxuTous op
portunity for &ccess and phtential."

;_ ~..
  
r_

  I am sure the President has told you that the Head
Start increase that he's recommended is the largest one-
time increase in history. The Federal budget has gone up
25 percent over the last 4 years, overall. Head Start
funding from the Federal Government has gone up 127
percent. I suppose it could be more as compared to the
rest of the budget, but nothing I can think of has had a
higher priority than the Head Start increase. Then there's
Even Start, the WIG program, and many others which I'm
sure you've already discussed in the last 3 days.

  The point I would like to leave with you is that when
you go home, I hope you will seriously think about
becoming deeply involved in creating an America 2000
community, because that will put you in the midst ofwhat
is going to be happening in America in this decade to help
our children reach this goal. That's the first thingwe have
to do. We have to get interested, and we have to mobilize
the community. They have to pay attention to mothers
who have no prenatal health care, to babies who have no
doctors, to children who have no one to love them or read
to them, to disabled kids who need a little extra help and
an opportunity to be included.

  All of these take time, and we can't make progress
if what we lead the Nation in is watching television. We
have to get unconnected from the television and more
connected with real people in our own hometowns. So
if, in Derry, New Hampshire, or anywhere, they decide
to respond to the President's challenge to become an
America 2000 community as they have in Las Cruces,
New Mexico, in Billings, Montana, in Omaha, Ne-
braska, in Richmond, l'irginia, America will benefit.
There are already 1,000 such communities; there will be
2,000 by the end of this !fear and several thousand as we
move on through the 1990s. In all of those communi-
ties, goal number one is the children.

  What I would hope is that while you're spending
some of your time advising LB how to change the Federal
spending patterns, the State commissions, and the various
advocacy groups, don't forget to advocate where you live,
because that's where you'll make the most difference. In
Decatur, tvhen they take the children in one high school,
one middle school and three elementary schools, and
they mobilize everything there to help those children,
they can do it, because there are that many children and
there's plenty of help and they can fit it together. When
we think about the whole world, sometimes it's so incom-
prehensible that we can't seem to find a way to make a
difference. Butwhen we think aboutwhere we live andwe
go outside and we spend that time with our children,
which is hard to do, as so many ofyou do as advocates, then
we can make a real difference.

  The schools can be changed to fit the needs of
working families and can be made more convenient.
They can be made better places for children who need
special help, gifted children, children who need help
catching up, and children who would like to go ahead.
For example, there's no reason schools should reall)
ever be closed. That's the first conclusion reached h>
Derry, New Hampshire. They can open the schools in
the afternoon to be convenient to working families and
in the summer for kidswho need special education, and
eveTone involved in special education knows ho\v much
a child loses betlveen Ma\- and September. There'4 110
lieed for that to I~appm. The school?, C~lll OlX'll Ill). ;111(1
f';llnilie\ th;it C;+II afti)rct it <.a11 tlctll l);l\ f()I rfl`l+--il


c~oe511't cost rlltlcll-mtl the <~o\el-lll1lcm1 (`;111 pi\ lot.
f'atnilies Iv110 can't afford it. It's JNst 2 llliltt~l~ ofcomittg
to the conclusion to do it.

  I thank !uu f'ot- coming:. xicl I thank most ot`\xnt
fix staying ttp 50 late. 1'1~ alwad!- had ;I glimpw at tht
thoughts that are I,ehiII(l\otu-report just thih morning.
I know that the Surgeon General with her irrcpressibil-
itv \vill makr sure that all of`us pa!' attention to \i%at wu
say. \Ve'll tt-v to do our best here in funding and the
organization ofprograms in NXVS that make a difference
for !`ou. I hope 1ou'll keep in mind that thet-e is a lot
there toIvot-kwith and that thereare childt-en\vho need
help. Still. the most effecti1.e place to make a difference
is in the faniilv, in the con~n~ut~it~, and in the places
closest to the children. Thank you vet?. much.

Roger B. Porter, Ph.D.
Assistant to the Pwsiden~t forEconomic nnti
Domestic Poliq

t's a great pleasure for mc to be \vith \ou to&t\ in
I,
  the final hours of this \.et-! impot-tattt (:onftit-ence
as You prepare to lea\-e behind a series of' finditlgs
that those of 11s in the Federal <h\~r~tme~tt arc c:tgtAt.
and anxious to read.  I salute ni!' gwat fi-itwtl. thr
Surgeoil (;rneral. for ho\tit~g this cot~tc,t-tnce. It i5 a
reflection of her tit-clra5 commitment to children. to
the health and \\.ell-beittg of` our Sation. ;tt1(1 to th<s
strength of the .\tnet-ican famil~~. Dr. So\-ello's rspet-i-
etice as a pediatrician has eqttippcd her l\ith special
expertise in the subject of this conferetlce, "Health\
CXldwn Ready to Learn." ;111d her eloq""lce a!? ;1
public setT;lilt in tackling man!. of'the most important
issues of-our da~~enables her to make a real difference.

  The President earlier this \\,eek reiterated to !.ot~
hiscommitment to thegoal that allchildren start school
ready to learn. This is a commitment that permeates his
admitlistration. The President's Education Poliq
r\d\-isoy Cotntnittee, lvhich is made up of educators,
business and labor leaders, and media representatives
hasspent much time discrtssillgwa!,s to enhance parental
itlvol\.ement in the health andeducation ofourchildren.

--

"The first conviction is that fayiiies
come first, . . . My second coxkction

. . . is that, in our lives, we must never

allow the things that mat&r most to
be at the mercy of the things that
matter least."

I'\xa had the privilege to be involved throughout the
;ttltnini~tration in the partnership with the Nation's
C;o\7rnors on education.  This partnership was
~stahlishrtl in 1 WY at the President's summit with
(;ovcrnors in (:h;tt-lottes~ille. \`irginia. Following that
\ttmmit. the PtxGtlent attd the Governors adopted six
Satiottal Educ;ition Goals for the first time in our
S;ttiotl's hisrot-r-. Those As goals pt-oxide a foundation
fib,- all of'oiir collectiw r'fforts to revitali7e our Sation's
ctlttcatiott s!.htetu. The!-aim to ensure that our children
h;t\~ thr' opportunity to start school ready to learn and
to grt the kind of education that will enable those
cliiltlren to sitccecd in life.

  This audience represents a mat-\vlous commit-
ment to that first Sational Education Goal-that by the
\~;tr `1000 all children in .\met-ica \vilI indeed start

who01 read\ to learn. You represent millions of the
Sation's parents lvho are the key to success in this goal.
SI!, time is shot-t rvith you this morning, and I simpl!
IGuit to leave lvith \`ou three brief conr.ictions that I hope
JUU \vill remember and cart-y home with you.

  The first conviction is that families come first. As
the President said to you on Monday, "In this adtninis-
tration. families come first." M'e live in a marvelous time
in histot? and in a marvelous time in the history of
the \\orld.  Ne\er before has there been greater

108 Parent5 Speak Out t'w America's Children


opportunitv and pet-haps nr~~rgreatet- challettgc. The
opportunitics for learning. travel, and cotiit~tttiiiratiott
at-e almost limitless. .Ind yrt this time ofgrcat oppixtu-
ttitv is also an enormous titnr of great challenge. The
fatAy, the most basic unit ofom- sock%. sccitts ttntler
                               *
almost clad!- attack. Thr need f'or conc'rt-nul and lo\ittg
parrtits ancl concwnd and lovin;g titettt~u-5 is as.:gt-wt xi
in a~tv time in our Satiott's histoll.. Thr Prt4tlrnt.
sensing this great need. att~tot~t~~ed in his State' of the
Lttiott .~ddrrss that hv bxs vstablishiti !g ;I cottttttissioti
on Atii~rica's tirhatt Ltmilies. partialh iii t-c\pottrc to a
rcniai-kahlc ttteetittg that he had u.ith ;I ~I-otip of` tltt
Sation'a maillot-5. K~ptihli~~ttns;tittl D~~~tocr~tt~.\~~l~oc;ttt~t
to hittluith a single antI Gtttplc tnvs;sagt' 011 bltich (ht.\
all qrwd. Tlte mrssag~ was that thcrc ~v;ts ~tot ;I sittglc
pi-oblem thw fxxd in otti. Satiott'4 gt-vat tii+xt~t xx25
that did not have al its troot\ the disitttvgtxtiott of the
fantilv. Thq called on the Ptwidettt IO uxd~ Ivith thvttt
in tt?ing to find wavs to rrhttilcl and stt-engtltcn tht*
family. .-Is tlte President said. in his ~ttltttiitistt.~ttioll.

families come first.

  MY second conviction I want to lcaw \vith JOII is
that, in our lives, tve ttittst never allou. thr thittgs that
matter most to he at the ttwrcv of the thing\ that matter
least. Plato once said that "Mhat is honored in a county
uill be culti\,ated there."  M'e as a so&t\. must honor

those acdvities that inwlve one generation transmitting
a set of fundamental values and aspirations to the rising
generation. .As this Conference has so successfull)
articulated, these elites must inc~ttde good health and
a comtnitment to learning. \Ce must learn to rrwxd
excellence in education, not sitnply to eulogize athletes
and entertainers. \I'e must culti\,ate a cultwe of charac-
ter in this county for, as Secretan. Sttlli\an has re-
minded tts frequently, the great health challenges tltat
\ve face now are not communicable disrases. \vhich 100
years ago caused our life espectaiicx' in this c0ttntt-v to
be 4.5 years of`agc. Those haw gone; lvc'\xa now ;tdtitd
30 years of life espectanc!- in thr la\t 90 \`e;tt-s of` our
histot-!.. That is ;I remarkable e\.ent: ttothing has ~`ICI-
bwn reen like it iii the histot-! of thv \vorld. Tht.
chall~iige~ \\t' f.kicc now b.itlt twpwt to hwlth art' ric~l
bra\-il\.toIifest\Ir-~0 tht~con4ciort~. rlt~litx~t-2tc.c Iroic <`\

that people make ahour how they arc going to live their
li\vs. I\`e hxe 10 be about the business of helping
chililt-cn rtntlet-stand v.ltat those choices at-e and how to
make the right onrs.

   .\lv third and final coii\.iction is that b've are all in
thi\ togcthrr. \\.e bxiit to cheervoii on as!~ou go to!`ottr
lto~tics. families, and professions after this ~ktllfet-rnce
has cc~ttclttdtd.~ Dedicate yourselves to commrtnicatiiig
and practicing the critical role that Eve ha1.e now to pass
on to ihe itext gt.neratiott the most valuable of treasures
\oti cm gi1.e to another pet-son: a health!. life. commit-
ttd to kat-ning. I applattcl. as kn\. others do, >-our
cldic;ttion and commitment, and I Irish you, and all of
115x4 ;I Sation. ~~11 asue tttitlertake this important task.
-rIl;illk \OlI \.el`\ lllllcll.

                             ._ -     
                                      -_

"My third apd final convict&n is that
we are all in this together;"


6

Panel
Presentations


Chapter 6

W hilt, thr State Pal-etit Dclcgates ww at-
     tending the Parrnt LVoi-k (;roups. the Gen-
     txrt Participants attended panel presenta-

tions dealittg with a nu~nbc~- of issues wlatcd to the
health aud education of children. The group of more
than .300 General Participants coii5isted of pareiitsI\,ho
wet-e not appoitttecl as State Parent Delegates (several
of whom represettted parent adwcacy groups and
parent networks): government officials; representa-
tives of Federal, State. and local government health,
education, and social senicc programs: representa-
tives of other public (iioiigo\et-iittietit~~~) prograins;
and reprecentati\.es of private programs. Each panelist
leas chosen based on his or her estettsi\.r experience in
the specific sub-jcct area to be presettt~d. T\\w concur-
rent panel presentations Ivet-e given in fi1.e diffet-cnt
time periods. Summaries of the pi-raentatiotis follo!v.

EARLY CHILDHOOD ISSUES THAT AFFECT
SCHOOL READINESS AND HEALTH

Moderator Xlarilyn H. Gaston. 11.D.. holcls the ranh of
&sistant Surgeon General itt the Public Health Srt-\ice
and is currently the clirector of the Bureau of Health Ewe
Delivery and .-lssistance at the Health Rtxnu-ces and
SenicesAdministration. Shedesct-ihedfi)m-cot-net-stones
that affect school readiness and health: adequate nutri-
tion, proper immunization, injut?. pre\.ention, and access
to primal? and pre\,enti\.e health care. The panel discits-
sion fitcused on building pre\etttive measures. providing
quali? services on tinte, and overcoming the barriers to
adequate health cat-e and nutrition.

Dr. Orenstein manages the Federal Immunization &alit
Pi-ogt-am, ~\hich supports the States' immunization pro-
gr;mts and provides neat-k one-fourth of all the vaccines
rotttittcl'r. used to l)revcnt disease itt children. He said
that L.S. immunization levels are the highest in the
~vorlcl: State law proricle for immunization of children
rrgardless oftheir socioeconotnic status. race, ethnicity,
etc. Orensteitt etnphasized that these immunization
requirements provide effective protection against dis-
txrs, not only for individuals hut also for communities,
because high levels of itnmunization in a commurtit!
calt stop the chain of trat~smtssion.

  Hwvever. Dr. Orenstein reportecl that recent sta-
tistics reveal some problems in OIII- immunization pro-

gratns. For example, ittner cities tttay have large con-
centrations of umxcinated people. Also, the recent
measles epidemic ~vas caused b>, the t`ailure to \,accinate
children at an appropriate earI!, age. To combat the
problem, Dr. Orettstein urged health professionals and
other ttwmbers of societx to talk to each other and
parents about thr need to wccittatc on time and the
implicatiotts of not cloitig so. He also Liked about the
itttportaiict- of a c~ommuiiit~~ iiift-~tstt-ltctitt-e to pi-oxide
vaccinations (~.g.. an adequate number of clinics avail-
able. appt-opt-iatv staff. and flexible hours for vaccina-
tiotts). Hr r~co~~tme~~d~d promoting immunization
through all health care contacts. such as early infant!
carr+vers. earl!, childhoocl health care providers, and
ducatol-s. He \tt-essed thr importance of ftguring out
the bar&t-s to prc~xwtion. "The bottom line," he said,
"is that ttiew is ii0 I-easoii for people to suffer from
ptwwitahle diseases."

Deborah Jones, B.S., M.S.
l>iWt/J,; .\`f'Zil,jfVSf~ .%NtP \\T<,' P,TJ~WflVl
Sm~,jmry Stntv Ik~mmw t of Hwlth
11s. Jottes discttssed the role of nutrition with respect to
the health ancl IveIl-being of children. Sating that
nutrition has physiological, psychological, biochetni-
cal. and social itttplications, she relayed its role in

112  Parent\ Speak Out for America's Children


providing enerR, digestion, and a host of`other meta-
bolic functions. She suggested \va!.s to ensure adeqttate
nutrition and talked about the recommended dail!
allowancesof\,at-ious nutrientsand how they help fostet
proper growth and development of the \-en' votung.
                                  
  Ms. Jones then focused on the symptoms and

treatment of tnalrtutrition and hunger. Both have a
ttegative impact on learning abilities and behavior.
Numerous studies of malnourished children sho\v that
they perform poorly on probletnsolving and psycho-
logical, cognitive, verbal, and visual tests. Other signs of
undernutrition are apath!-, inattentivettess. problems
interacting with others. and other learning problems.
Ms. Jones noted that nutrition progratn~ such as \$I(:
provide several benefits, including food supplements,
information on nutrition. and social setTires. L1l(: is
sometimes t-eferred to as "the gattww" to health care,
imtt~tmizatiot~. Food Statttps, XIrdicaitl, Aid to Fatnilivc
with Dependent Children. and .\Iigt-ant Education. 111
the lot~grtttt. \\I(: cat1 s;\\Y' \Ietlicaid c'ost\ for tt(,\\-bot II\

and mothers. M'hen mothers participate in the pro-
gram at the prenatal stage, both baby and mother
become healthier. Ms.Jones affirmed that at-risk babies
whose mothers participate in the \2'IC program are born
healier than those u,hose mothers lacked that advantage.
In closing. Lls.Jones urged the eradication of malnutri-
tion and hunger and the promotion of social sen-ices to
addt-e\h the needs of.ttndersetTed and targeted popula-
tions. To achieve these objectives, she advised (1) edu-
cating the .\ntrrican population 011 the importance of
nutt-itiott. (2) expanding the \$`IC program to sene a
lat-gtar portion of its eligible population. and (3) protnot-
ittg programs that pt-oxide nutritious school lunches.

According to Dr. l\`ilson, preventing injuries to chil-
dren ma!. he the most significant challenge to health
caregiwt-s for children. One in five children is serioush
ittjwed ewt? year. One-half of childhood deaths are
due to injuty . and the nrtmher is grooving. Howe\,et-,
prrwnti\.r measures have been slow to develop. noted
Dr. \Vilson.

  Injuries to children result frotn a variety of inci-
dents: accidental shootings, poisoning, falls, motor
vehicle accidents (both occupant and nonoccupant),
drolvtting, and burns ft-om fit-e or other sources. The
injurv problem visits different populations in different

ways. Statistics show that bo!,s are tnore likely to have all
npes of injuries than girls and that children ofcolor are
at greater risk than uhites. Because many types of injut?
require home treatment. parents need to kno\v and
apply first aid skills.  However, not all parents are
equipped to handle injtttT.
                 
  The lasting effects of injuries vat? greatI!,, and the!

can he significant. Injuries ma\' interfet-r with the ahilit\
to move or tttanipulale object5 for the rest of the child's
lift. Head injttries interfere with ph\.sical and/or mental
ftmctionitlg-\\.hrthel- or not the child beconte> cotn-
plete11 disabl4. B~~tttre itt,jtu-its nta\' afflict ho\\- :t child
IOO~S. thw oftt3i 1tc~lp Io\\tar his 01` hrr 4~Hi5t~c~lll. III :I11
of th<,\y (a,~`\. iltjttl\ ;~f'fix II (.ltil(lt-<.lt'4 i.(7l(lill(.\s 10 IC'~tl~lt.


  How do children get into situations that cause
injuries? Dr. Wilson believes accidents occur in part
because children live in an environment designed by and
for adults. First, childrens' small size is a problem because
they can easily slip through spaces. (Seatbelts and grocen
carts, for example, are not designed for children.)  Sec-
ond, children lack thejudgment and experience that this
environment requires. For example, they ask questions
such as "Is this gun a toy? Can I fly like Superman?" To
combat the childhood injury problem, Dr. Wilson noted
that supenision of parents cannot always be relied upon
as a solution. Instead, she advocated, we need to build a

"
. . . while three out of four elderly
citizens receive financial assistance, a
large number of children-one out
of five -lives in poverty, and one

child out of four is born into poverty."

better environment for children.

Myron Allukian, Jr., D.D.S., M.P.H.
Director, Personal Health Se-ruices
Boston Department of Health and Hospitals

Dr. Alhtkian spoke about the importance and the diff-
culty of getting primary health care and preventive
health care for children. Quoting MarkTwain, he said,
"Even if you're on the right track, you'll get rut1 over if
you just sit still." He urged taking an aggressive ap-
proach to solving children's health care problems.
because the Nation has not emphasized that Ivorking
together to produce the healthiest children is a prioriK.
He noted that, while three out of four elderl! citizen>
receive financial assistance, a large number of chil-
dren-one out of five-lives in poverty, and otte child
out of four is born into poverR. Yet cash payments to
needs families with children have decreased sigttifi-
candy. This situation broadens the gap between the
haves and the have-nots and atnplifies the social prob-
lems that stem from poverty-atnong thetn: ( 1) inad-
equate health care and food supply; (2) poor academic
performance; (3) teenage pregnancy; and (4) [tide-
spread drug and substance abuse.

  To address this situation in which many people
lack health and dental insurance and an increasing
amount of care is given to fewer and fewer people, Dt-.
Alhtkian offered the following guidance. First, health
care priorities tnust he reversed so that the health care
system promotes health care for everyone. To accom-
plish this reversal, the national budget for health care

must he increased. Parents, educators, health profes-
sionals, and legislators need to become more account-
able. "Currently," he warned the audience, "we are
using hand-aid approaches." Head Start semes only a
small portion of the people l\ho need it. Community
health centers reach only one-fifth of the children
eligible for senicrs. He noted progress in lowering
infant mortalit\- rate% for the Sation; however, he said,
the black population still experiences tlvo to three times
greater rates of infant mortalin.  Second, national
leadership must promote preventive health care for
evctT man, \~wtnan, and child. Communi~-based pre-
vention set-r-ices and a national health plan, including a
preventi\.e health program for kindergarten through
grade 12. must he provided. The plan would include
national programs in fatnily planning to promote the
concept of having children Jvho are wanted. Third,
medical schools neecl to be encouraged to cooperate-
rather than to compete-for private sector grants. Fi-
nally. Dr. Nlukian talked about the importance of
sensitivity to the needs of the commtmity and private
citizens when dealing with health matters because, he
said in closing, "children are 100 percent ofourfuture."

114 Parents Speak Out for America's Children


Deborah Clendaniel, MS.
Diwrtor, Maternal and Child Health Services
Lklawaw Division of Public Health

Ms. Clendaniel's presentation introduced the concept
of one-stop shopping, or colocation, for health and
social senices deliver),. This type of system has been
working in Delaware for more than 20 years. Having a
single point of entry into the system makes obtaining
senices and enrolling in appropriate programs easier
for clients, thereby increasing the number of people
\vho receive the senices they and their children need.
The staff of the Delaware Sewice Centers see them-

selves as a "funnel," helping to direct clients to the
senices the\. need and to cvhich they are entitled, all
during a single visit. Each center houses a variety of
health and social services, including senior centers,
health clinics, parole/probation offices, daycare facili-
tirs. and migrant health offices. Most are open from
i:OO a.m. until 900 p.m. While clients' convenience is
the main concern, colocation also benefits program
administrators.  Information can be shared among
agencies, and the certification and income verification
process is greatly simplified. Referrals (e.g., for speech/
language/hearing evaluations) can be made in house.
Automated data management makes client informa-
tion more accessible, keeps it up to date, and lets the
staff members closest to the client access the data they
need to make decisions. Ms. Clendaniel said that the
guiding philosophy is that delivery systems must begin
toaccommodate, rather than merely tolerate, the needs
of the population they serve.

HELPING FAMILIES GET SERVICES:
SOME NEW APPROACHES

This panel, moderated by Ronald \.ogel of the Depart-
ment of Agriculture's Food and Sutrition Senice, pre-
sented several innovative ways of eliminating the diffi-
culties many parents encounter in tning to negotiate
the bureaucratic maze that surrounds the senices the\
need for their children. Making the s!xtem more
comprehensible, more user friendly. and simpler to
access was the common theme.

Juanita C. Evans, M.S.W.
Ch$ Child and Adolmmt Hmlth Rw~~ch
Lkparfmfv f of ,Ilnffvn0l, Zvfknt, Child. ON!

Ms. Evans presented the new Model Application Form
whose development was mandated by the Omnibus Bud-
get Reconciliation Act of 1989. The Xlodel Application
Form is designed to simplify the application process for
individuals and families eligible to apply for any or all of
the seven aid programs offered through the Maternal and
Child Health Bureau. In keeping with the congressional
mandate, work was completed within 1 year's time and
manv agencies (including the Department of Health and
Human Services, the Office of the Assistant Secretary of
Health, WC, Medicaid, Head Start, and others) were
represented on the interagency work group. Ms. Evans
said that including representatives from the Office of the
General Counsel and otherre\iewing bodiesgreatly helped
the process, because their input was obtained during the
development phase rather than after the fact. The Model
Application Form is available for use from the Maternal
and Child Health Bureau or from Governors' offices.
State agencies are free to use the form in whole or in part,
to adapt it as necessary, or to not use it.

Mary Jean Duckett

Chief; Home and Comrn unity-Bad ?t:nirter- Branch
illedicaid Buwnu
Helrlth Carp Finnnring Administration
MS. Duckett explained the Targeted Case Management
benefit available for some Medicaid recipients. Selecting
Targeted Case Management allows Medicaid clients to
choose a certified case manager to assess their needs
and guide them to appropriate senices and agencies.
Case managers not only refer clients to ~lrdic;~id-co~~rl~ctl
agencies 21id provitl<~rs. but ;llso help clietits ilttc.1.ilc.l
\t.itll 1;111dl~)1-d4 01. hou~ittg ;igc.nc it,\. 4cl1o~~lc. ,llltl :lll\


other arcas i\herc ;issixt;iilw i\ nrtdtd. SItdic;~id is ;i
Ft*deral ag:enc!. that is State adininis~rwcl. 2nd Statm wt
inoht of`thc regulations Ihat gowri1 ~4~0 is t~ligiblt~. rvhat
senices art'covel-ed. and \vhicii pr-ovitltm ;irt~;~uthori/etl
to reqttrst reimbut-sernrtit for sei7ices rendered. States
tnav make Targeted (:ase Slat~agetnet~t a\xilable to
Lleclicaid clientson the basis ofiticomr. cet-rain medical
orps\.cliolo~ical conditionx, qeograptiic region. aqr. ot-
                      c
other criteria as deemed appropriate. Authorked case
managers can be schools, social u~xkers, or othet-
agencies. and case managers need not work for public
agencies. States tnav not resrrictcase tiiati~tget~eligil~ilit~
to a particular provider; rather. general qualifications
must he written to allow a nt-ietv of provider3 to he
eligible.

The 1Vyotning Health Passport. prcwntetl to the audi-
ence by Dr. MYhams, uses smart card technoloq~ to
record and store cotnprchensi\~r medical and eligibil-
ity data for \VIC clients in ;I format that is pot-table.
itiespetisi\.c, cay. to itpclate. and cottfidcntiai. The
passport itself, wliicli looks like a credit card. i5 ;I 16
kilobyte tnicrocotnputer.  The cards cost about SIO

each and have an estimated life of` .j \twx .I twd`~
tnemot~ capacit\. ciiii be doubled foi- ;it)oiit SO.40.
Because M'IC information take\ up ottk about one-
third of the card's metnor\., thr rt'tnainitlg memory k
open for other agencies to IIW.  X client \vho visit\ a
senice provider presents his or hct- cai-cl: the client'\
history is al-ailable to the ptxxider, and thtz card is
autotnaticall~-~tpclated each time set-vice!, are rrndered.
Clients control access to the itiformatioti throttgh the
use of PINS. Clients can obtain paper copies of thcit
entire record at MI<: offices. Dr. \Villiam\ said that the
Health Passport has hrrn especiall~~\.aluablc in sparsely
populated r\ivtnitig. because it eliminates both the
delay and the cost of mailiiig. tt~lq~hotiitig, or faxing
information among agencies.  Other Statrs that arr
preparing to pilot similar programs are .\lontana. Sorth
Daliota. and Idaho.

\I\. French closed rhe session uith a discussion of
priKrc>, x~tl cotifidt~titialit~ of client information. A-
thottgh integratittg setTices and sharing data have ben-
efits. wch rscliatigc~s tnay sotnetitnes threaten patient
cotlfidentialit~. \Z;tn!. Federal and State regulations
govern thr exchange or disclosut-e ofpersonal informa-
tion. Special regttlatiotis ,
            apph. to certain sensitive
infot-mation. such 25 program record5 concerning sub-
3tatnc.e ahusc, .UDS status, sesual histot?, and actual OI
~usprcted child abuse.  In integrated data systems,
confidentialit!. ma! bc maintained by the use of pass-
uxwds. wad-ottlv set-eens, cscluG\~e or restricted access
files. and othermetltods. In searching for the appropri-
ate lx~lancr bct\vecn data sharing and client privacy, Ms.
Frrnch asserted, atltiiitiistt-ators should solicit clients'
opinions about \\kat information ma\- be shared and
lvhat ititi)t-matioti ma\ not. .~dtnitiistratot-s must review
and bccomt~ tatniliar \\itli the txyuiretnetits of all appli-
cahlc lrgislati\v, regulatot7~. ot-p"lic\-t-rstrictiotison the
release oJ'inti)t-m;tti~~n. Fit+., 11s. French urged con-
titiwd coopt*t~atioti ;iinotig agencies and progl-ani\ as
tlir\- x01.1\ to bala~ice thew t\co ittiportant concerns.

HEALTHY CHILDREN READY TO LEARN: WHAT
ARE THE ROLES OF PARENTS, EDUCATORS,
HEALTH PROFESSIONALS, AND THE
COMMUNITY?

The theme of' this pmcl, tnodrt-atecl by Josie Thomas,
Prqject Coordinator for the Fatnil!- and Community Set-
~~orliitlgPt-ojectattherlLssociationfor theCareofChildren's
Health, ~~ascoopelationatnongparents,educators, health
professionals, and the comtnunit\ in raising healthy chil-
dren. Each speaker stressed the need for true collabora-
tion, interdependent partnerships, and empowerment.

116  Parrnts Sped Out for America's Childrm


;Ils. Streett iwgcd the audi~i~c~ to plkt fatnil\-i\weat tllc
top of'tlre national +qwtla and to im1mn.c the clIialit\-of
lifk f'or.-\nl~lic-an l;mliliv\. Highlightillg tile pi\c)t;tl roits
of` parents in meetiiig tllt3t goals. slit- said lwoplt
should tui-li to parc'i~ts fil,\t \\.hcii looking t'or infi)nna-
tion pux~ining to childi-vii'\ I\-elklwiiig.  "The onI\
peopk \\ho can iiiaLc ;I change fill- pai-c*l~t\." \liv uid.
"arc parcnts." She citcbd adoptioti statistics to illtl5tratc~
lio\v rapidI!. the ~vorld ha\ cliangrtl. Fifrvcti \ cw3 ago,
the proctw to adopt ;I child tool\ an a~uag~ of'o~ih 9
months. Solv. the situatioli ha5 w~~iwd. Gtli onh I of
X.7 tt'enagei-s prcwiitiii;g her balx Ii)r atloptioli. tIllI\
cl-wting a shortage of'atlopt;~l~l~ lxibir4 and long \\.ait-
ilig lists fiw prospu~ti\r atlopli\t~ pawiits. llou~\w.. JIs.
Streett empliasi/ed that. in thv faw of' ;I changilig
sobet!., thr needs of'childreii and tlic ncwl fix stl-ong
families haw not chaiiyed and ii~\w bill change. Ln-
fortunately, tocla!-`s demands on propl~`s li\w ma!-
cause them to forget about thr support that children
neecl. .\lthough the support children nwd is commoii
knoukdge. not e\w?ulir recognixs that parents are
the largest untapped political constituenc.~.. AIs. Strrett
offered the fi)llowing guidance. ( 1 ) Ensure that uxy
political candidate-loc~~l. State. and national-sup-
ports the needs of parents. (2) Encourage parents to
voice their nerds. For example, children's needs can be
supported h!.creatiiig a better~~orliplace. Some offices.
she said. are leading in this direction 1)~. allwing: chil-
dren to come to Ivork with their parent lvhtw the
childcare pro\kIer is sick. Noting that the Cnittd States
is possihh the onh \I-estern countn` that does not ha\.c
a family and medical leave policy, Streett told the group
that it's time to get motivated. (3) Encourage childrtw
to be creative and interactive. She directed parc`nts to
turu off the video games and television. In closing, she
urged the audiencr not to "take tl1e .?`;1s\ \\`a\' ollt
                                   
because we're tired, I~ecausc~ none of IIS iii-t' as tired 2s
our grandmothers w7e."

Dr. Epps spoke about the integral role of educators in
the partnership with parents and families, health
pr~~f`cssional2, and commuiiit~~ resource people.
~~ollal~or~~tioii. he said. rnables educators to interact
rffecti\-el! l\ith individuals, f'amilies, groups, and
communities to enhance a\`iareness of problems,
promote appl-opriate action, and advocate solutions.
HC talktd ;tholIt the lieed to establish goals. Ivhich he
definul ;I\ simpl!. drcwnr \vith a timefl-ame, such as
l'rrsid~nt I~r~~h'~goala fi>r thy \var X00. The educator's
goal\ must maxinli/e thr ph\-sical. emotional. and social
~\.vll-being of`chiltlre~~. .-1 compromise in an!. of' these
;wc`;is might af'kt childrrn's ahilit!- and willingness to
Icarn. Kcali/ation 01` goals. said Dr. Epps. requires
educator-s to NW I\~~o~vlrdge and skills effectiveI! in these
thaw roles: ( i I assessor. (2) advocate, and (3) promoter.


  Dr. Eppselaborated that, although formal mecha-
nisms such as screening activities and programs help
educators assess children's needs, these mechanisms
shouldn't replace the daily monitoring of children's
behaGor and actions. By obseming behavior, attitude,
and/or symptoms in daily interaction with children,
educators can begin to understand the physical, emo-
tional, and social risk factors that have a negative impact
on children's health. The), then can address actual or
potential needs by communicating their knowledge
about children's patterns of growth and development
to other members of the partnership-families, com-
munity resource people, health professionals-to rein-
force behavior (if healthy) or intenrene (if unhealthy).
In the role of assessor, educators must negotiate, con-
sult, and refer. They must work with outside health
professionals to gain knowledge and skills so that fami-
lies and schools can replace unhealthy lifestyles with
healthy ones.

  As advocates, educators influence the way the
community Gews and responds to the goal of making
children healthy. In this role also, Dr. Epps noted that
strong collaboration with other partners-legislators,
civic leaders, corporate officers, and community lead-
ers-iscrucial. For example, noting that Head Start can

"The message needs to ring clear that
(1) society is in danger when
children's health is at stake, (2)
children's health and learning go
hand in hand, and (3) proper
resources must be allocated to ensure
the health of children."

be replicated anywhere and that Head Start makes
children ready to learn, Dr. Epps stressed the fact that
public schools are not yet ready to receive Head Start
graduates. Public schools need to collaborate with the
local Head Start programs. The message needs to ring
clear that ( 1) society is in danger when children's health
is at stake, (2) children's health and learning go hand
in hand, and (3) proper resources must be allocated to
ensure the health of children.

  As positive role models, educators must promote
a healthy lifestyle by showing nutritious eating patterns,
participating in exercise and fitness, practicing stress
management techniques, and eliminating substance
abuse. Finally, educators must promote comprehen-
sive school-based health programs as feasible and cost-
effective. In closing, Dr. Epps reminded the audience
that healthy children are the product of instituted and
sustained change. "Only through health," he said, "can
children learn."

Robert G. Harmon, M.D., M.P.H.
Administrator, Hrnlth Resourws and Seruiws

It is important to get children healthy and ready to
learn each year, in 2nd grade as well as 12th grade,
began Dr. Harmon. His presentation focused on the
role of health care professionals in making children
healthy, the problelns they face, and characteristics of
successful collaborations. He noted the multitude of
problems that concern health care professionals: low
birth lveights, infant mortality rates, immunization,
and ernironmental contaminants. To address these
problems, he said, communities need partnerships of
all kinds: between the public and private sectors;
between various professionals such as psychiatrists,
social sellice workers, and family physicians, etc.; and
between parents and all others in the partnership. The
family environment is the most significant factor in
prodding for children's health, said Mr. Harmon,
because, "while social senice systems fluctuate, the
family is constant." The family profits from successful
collaboration.  Among the criteria for evaluating

118 Parents Speak Out for America's Children


"The family environment is the most
significant factor in providing for
children's health . . . because, `while
social service systems fluctuate, the
family is constant.`"

programs is the ability of health professionals to
( 1 ) understand the de\~elopment needs of infants,
children, teenagers, and families, (2) provide family-
centered care, (3) provide emotional support to
families, (4) understand and appreciate that families
have different methods of coping, (5) access a deliver)
system that is responsive to parents, (6) be culturall)
competent, (7) understand and honor racial, ethnic,
and cultural differences among families, and (8) respect
beliefs, attitudes, and talents of family members.

Charles P. LaVallee
Executive Director
Caring Program for Children

Western Pennsylvania CaringFoundation, Inc.
The Caring Program for Children is a Blue Cross and
Blue Shield program that acts in partnership with the
community to provide free primary health care to
children living in poverty. The program operates on
the premise that children won't be ready to learn if they
are not healthy, and the program's overall goal is to
empower parents. Therefore, a key feature of this
program is that each participant receives a medical card
so that no one knows he or she is in need, and
confidentiality and family dignity is thereby protected.
The program works because the burden is shared

between the physician who provides care in the hospital
and Blue Cross and Blue Shield, which matchesexpenses.
Empowerment of people in this way and building of
partnerships are key to the success of this type of program.

  One of the problems society faces, said Mr.
LaVallee, relates to the "knowledge gap"about the large
number of people M.ho lack health care insurance. A
strategy for combatting the problem of the uninsured is
to promote communityfundraisingprograms that keep
funds in that particular community. The strategyworks
with the help of community leaders and mobilization of
power bases, because people are attracted to projects
designed to keep money at home. Mr. LaVallee stressed
the need to form partnershipswith hospitals, legislative
staff, and community leaders, among others. He also
emphasized the need to work with both the media and
members of these partnerships to find people in need in
the community. He cited some examples. In one case,
M'IC workers. school nurses, and hospitals discovered
people in need. In another case, the media used an
identifiable figure-television's Mr. Rogers-to iden-
ti$ thousands of needy children.

  Poverq health care needs are an important priority.
To underscore this importance, Mr. LaVallee posed a
situation in which chronically ill children of deceased
parents lose their eligibility for medical assistance once
their social security income runs out. Mr. LaVallee recom-
mended dramatizing such situations through the media.


and trauma centers are forced to fold under the pres-
sttre of`providitig fi.ee medical care to indigent patients
\vho have been shot or stabbed, the resttlt is fewer
hospitals and trauma centers available to all. Dr.
(:oletiian-~lillei~ closed the session with an invitation to
her l\w-kshop sessiott. I\&vt-e she would discuss inter-
vention strategies.

SPECIAL ISSUES THAT IMPACT CHILDREN AND
FAMILIES: SUBSTANCE ABUSE, HIV, AND
VIOLENCE

Moderator Bill Xlodzeleski of the Department of
Education's Office of Drttg Plantling and Outreach
called this panel one of the most important at the
Conference. He stressed the relevance of the issws that
would be discussed by the panelists, noting that these
issttes will touch the o\-etvhelming majoritv of Ameri-
can children and adolescents before they gradnate
from high school. Substance (drug, alcohol, and to-
bacco) abuse, HIV and .-UDS. and violence affect onr
families and commnnities \\ithottt regard to race. re-
gion, or income level.

Beverly Coleman-Miller, M.D.
I?-QSidQtl t
Tfw BC.11 Groups, Inc.

Dr. Coleman-Miller spoke about the impact of\iolence
on children. which she has ohsen-ed in more than 2.5
years experience in the medical field. She cited the
horrendons statistics for deaths. shootings. and stab-
bings, then pointed ant that these figttres accomit onI!-
for reported incidents. The graving acceptance of
violence in the streets as a part of life is. according to Dr.
Coleman-1liller, the single biggest problem that must
be overcome in putting an end to violence. "The
United States nnderstands that children lvho rvitness

violence are different from children T\-ho clon't," she
said, citing the special educational and cotmseling
programs that were lamlched for children dnring last
year's Gulf War. No such programs exist for children
whowitness streetviolence on a daily basis. Dr. Coleman-
Miller expressed her belief that the titne for studying
the effects ofviolence on children is past; now we must
work to eliminate violence. She retninded the andience

that violence affects all of US. Children who witness
violence at an early age grow up believing that violence
is an acceptable way to deal with conflict. and the c!,cle

Dr. Wendy Baldwin
Uqbit~ Diwtor

Dr. Baldwin discussed the social effects of pediatric and
adolescent ;UDS cases. Dr. Baldwin emphasized that in
pediatric.AIDScases,~ve must consider familieswith;UDS,
not jttct children Ivitlt .VDS. 1lore than 3,300 children in
the United States are kno\vn to have AIDS, and because
Ml-blo\vn AIDS is the vntl stage ofthe disease, the number
of children l\ho are HR'-infected is assnmed to be much
largrr. <~ttrrent estimates place the nnmber of infected
childrctt benveen 10,000 and W.000. ,UDS is the ninth
katling canse oftleatlt for childrrn in the general popu-
lation ancl the Gsth leading cause of death for ,Urican-
.~tn~rican childt-en. .-\IDS aftccts minorities and the poor

"AIDS is the ninth leading cause of
death for children in the general
population and the sixth leading
cause of death for African-American
children."

120 Parents Speak Out for America's Children


disproportionately, often striking individuals and families
least equipped to deal with the resulting pressures.

  Children contract AIDS in one of two ways: they at-e
born to an infected mother or they receive a contami-
nated blood transfusion. In most cases, at least one parent
already has the disease. Often, the familv has a 1listot-r. of
substance abuse, ancl manv children with ;UDS are mcm-
bers of unstable or single-parent f`amilirs. PaverF' is
another problem that frequent]\. affects .UDS families.
Man)- HR'-positive children are wards of the Statr and at-e
therefore denied access to the state-of-the-art treatments

that are available onlv in clinical trials.

  The stigma attached to ;UDS because of its t-outes of
transmission (intra\.enous drug use or unprotected inter-
course) can lead to gra\`e consequences for cltildrrn \vho
are diagnosed with the disease. In some cases, parents
have hidden the child's condition and haw refttsed to
seek medical treatment for the child. .%I Hn'-positi\-e
diagnosis has in some cases led parenti to abandon their
children. Oxen children becotne infected through con-
taminated blood transfttsions, the stigma, emotional pain,
and financial strain of this new disease often compound
the w,orries of the medical condition that required the
transfusion in the first place.

  Adolescents constitute a significant risk group,
especially those who lack the supervision and guidance
that a strong family provides. C'nprotected sex atih
drug use remain the two biggest risks for HIV transmis-
sion among teenagers. Dr. Baldwin said that, while
parenting skills did not require extra work in quieter
times, parents must devote added attention and effort
to rearing children in this turbulent era. "Families are
the basic socializing unit for children," she said, as she
underscored the importance of teaching children self-
esteem and discipline early in life.

Millie Waterman
Interim Chairman

National Phrent/Teacher Association `(p7:b HQa!lh nnd

Welfare Commission

Ms. Waterman presented the PTA's approach to addrcss-
ing the critical problems of substance abuse. AIDS, and
violence. At the heart of all its policies is the PT;\`s 95year-

old tradition of support for parent involvetncnt. Tht
National PTA is working to achieve three major goals itt
conjunction with the President's six National Education
Goals: (1) to design and implement compr~ltcnsivr
parent involvement progratns in schools across the coun-
tt?, (2) to identic and eliminate the risks to children, and
(3) to use the schools as a de1iyet-y point for coutlseling,
nutrition. and health programs.

  On the topic of substance abuse, PTA advocates

;I "110 us?" policv designecl to eliminate the mixed
messages children recrive about drugs, alcohol, and
tobacco. .Uthough the use of illicit drugs (such as
cocaine and marijuana) has declined over the past
drcadc. tltc use of alcohol and tobacco has increased.
To he cuccessful. 11s. M'aterman said, drug use
prevention programs must discourage the use of all
drugs and must be supported bv the entire communitv.
Sot only children but also parents must be educated
about drug use. PTA is the recipient of a grant from
General Telephone and Electronics, Inc. (GTE), for a
program called "Common Sense," which targets
children benveen the ages of 8 and 12. This p&gram
is based on three components: (1) building strong
bonds betv-een children and families, (2) setting limits
and rules for children. and (3) serving as good role
models for children.  PTA also calls for an end to

"At the heart of all its policies is the
PTA's 95-year-old tradition of support
for parent involvement. "


televisiol~ ad\,ertising for beer: this ad\-ertising is nlost
often aired dtu3ng sporting cyents, lvhich are lvatched
b!, thousands of children who get the impression that,
in Ms. M'aterman's words, "beer time is party time."

  On the subject ofAIDS, PTA has begun a program
called "AIDS Education in the Home and at School"
with a grant from the CDC. PTA urges all hoards of
education to establish policies on the school placement
of children with AIDS and on AIDS education in health
and hygiene classes. PTA advocates sexual abstinence
as the bestway to prevent the spread of;UDS among the
teenage population.

  PTA also recognizes the m~any forms violence takes
in our sociep. Corporal punishment, or beating children
as a means of discipline, is legal in 28 States. The National
PTA promotes banning corporal punishment across the
country. Television violence is another area of concern.
The National PTA also \\.orks to reduce the violence that
gangs and child abuse inflict upon our children.

Mark L. Rosenberg, M.D., M.P.P.
Director, Division OJ Inju ty Co~ttrol
,%tionnl CtwterJor Enz~irontnentnl HeulUl und

lnjtq Control
CenfrrsJor Dkrmr Con~ml

This presentation on the public health approach to
violence prevention closed the session. Like Dr.
Coleman-Miller, the opening speaker. Dr. Rosenberg
stressed that the time for action has come. The solu-
tion to violence in America isn't buying guns, installing
home alarm systems, or putting metal detectors in the
schools; rather, it is preventing violence in the first
place.

  Although the popular conception of CDC has to
dowithdiseasessuch as AIDS and toxic shocksyndrome,
CDC's prevention philosophy is no less applicable to
violence. According to Dr. Rosenberg, "accident" is a
word that has heen removed from the CDC \-ocabulan
because it implies that injury is unal-oidahle. On the
contra?, he said, violence is preventable using the same
steps that researchersfollowin epidemiological (disease
control) studies. First, the reports of violence and
intentional injuries are studied to determine recurrent
patterns. Next, researchers work to design possible

intenentions that would prevent such incidents. These
interventions are then tested to determine which are

most effective.

  Dr. Rosenberg emphasized the prevention aspect
of CDC's approach. Unlike police officers and other
law enforcement professionals, public health profes-
sionals can get involved before the harm is done. Public
health officials also ha\ie access to a broader range of
incidents, because unlike police, they can work on cases
where no criminal activity is involved. As part of CDC's
prevention efforts, Director Bill Roper recently an-
nounced his intent to begin a National Center for
Violence and Injury Prevention at CDC.

DISABILITIES

Moderator Vernon N. Houck, M.D., Director of the Na-
tional Center fi)r Emironmental Health and Injury Con-
trol at the Centers for Disease Control, began this discus-
sion h!- contrasting recent progress in eliminating dis-
eases, such as polio paralysis, rubella, and cerebral pal?,
\\ith the need to reduce the causes of developmental
disabilities in children. Prevention of the diseases was
successf~~l, he stated, because the cause in each case was
identified. However, learning disabilities such as those
related to childhood lead exposure are not yet prevent-
able because lead poisoning and its sources often cannot
be pinpointed. In their discussion of lead poisoning,
mental retardation, fetal alcohol syndrome (FM) and
fetal alcohol effects (FM). Dr. Houck and the panel
speakers delivered a common message: although it is
costly to remove pollutants and take preventive measures
to combat other disabilities, "the cost of doing nothing is
far more than the cost of finding intenTentions and apply-
ing them." The speakers emphasized education and
prevention, wherever possible. When pre\Tention is not
possible, quick intemention and diagnosis are needed.
Equally important is research to determine the causes of
disabilities if they are not completely understood.

122  Parents Speak Out for America's Children


Sue Binder, M.D.
Clt iPJ; I.fwl Poisoning Prtwn tiott Urn nclt
Cm tmr Jh I~iwtrw C'otttrol
According to Dr. Binder. childhood lead poisoning is
an ancient problem. TheRomans discovered the weet-
nessoflead saltsand used them in alcohol. Today,water
and soil hall more lead in them than we think, and lead
is still found in paint. .As a result, children ingest lead as
part of their normal hand-to-mouth actkit\-. Although
lead-based paint I$YIS federalh~ ballned in the 19ZOs and
193Os, it is still used from time to time. In the 1940s.
several cases of lead poisoning manift,sted s\mptoms
like iilflamiiiatioIi of'the brain, itiabilitv to\\Xlk and talk,
and-in the wnw cases-death. The Byers mtl 1.01-d
study follor~ed 10 6- to 1 I-lear-old\ Icith problems sns-
petted to be caused by lead poisoning. The researchers
found that the children'5 intelligence quotient (IQ)
~~average. but they did poor-l!-in school. The children
appeared to be smart, but they did not learn. In the
1970s the Seedleman study examined lead exposure in

children who did not display symptoms b!, measttring
lead levels in their teeth. The findings revealed a
positive correlation between high lead levels in teeth
and teachers' evaluation of distractibilic, and other
academic performance characteristics. Children with
high lead levels had lower IQs (by 4 points) and did not
perform as well as those with lower lead levels. The
Seedleman study follo\\,ed these children for 11 years
(through high school). The followup findings shelved
that. although these children displayed basicallv nor-
mat IQ, they performed below normal and had high
dropout rates and absenteeism.

  The tragedy is that these problems of lead exptr
sure are pre\.entable. Howe\,er, according to Dr. Binder.
"Cntit the 1970s. people were not concerned with lead
esposure unless they displayed svmptoms." At that
time, 40 micrograms of lead per deciliter was consid-
ered to be a problem. In 1991. the Surgeon General
considered 10 micrograms per deciliter to be a prob-
lem.   "The bad ne\\s." said Dr. Binder, "is that we
wom'about lead levels that are lower and lower, but the
good news is that we are finding the average blood lead
level to be dramatically declining." The reason for this
deciine can be attributed to tower lead in gasoline and
stricter laws by the Environmental Protection Agency
that result in reduced lead levels in blood. We have

reduced these environmental sources.

  However, the major sources of lead stilt are lead-
based paint, paint-contaminated dust, and debris from
window wells that children ingest in normal hand-to-
mouth actkit)-. Older homes that have undergone
renovation are a particular problem. The Department
of Housing and Urban Development estimated that, in
1980, 74 percent of homes still contained some lead-
based paints. In November 1990, Herbert Needleman
spearheaded a plan with a program agenda that called
for an increase in the number of prevention actkities
and programs, an increase in the abatement of paints
and lead poisoning, and an increase in the surveillance
of elevated blood levels in children. This agenda has
resulted in increased ft~rlding dollars and increased
efforts to promote partnerships in the pri&jte wctot
and fottttdatioti sitpport. .tmong othrt-s.

Report of the Surpwn General's Cont'errncr  123


Craig T. Ramey, Ph.D.
Iliwc-tar

Dr. Ramey described the `*rapidI!. changing landscape"
for children jvith disabilities, particularly mental retar-
dation, x society stands on the threshold to mount new
research for programs to treat and prevent these dis-
abilities. Mental retardation, he said. represents 7.3
percent of all disabilities and is predictable: it is not
randomly distributed. The poor are at a 11lucll greater
risk for mental retardation than other populations.
Pet-hap5 23 percent of individuals that fall below the
poverty line are at an elevated risk for ~nental retarda-
tion that lasts over more than one generation. Mothers
with an IQlower than 70 are also at greatel- riskofhaving
mentalk retarded children.

  Mental retardation is cauqed 1,:. factors such as
poor health care and wstemic mild insults. Se\-ent!.-fi1.r
percent of mental retardation Ml in the mid-raligt (IQ
of .j.? to `70). "The notion that mental retardation i> a
permanent characteristic of a perwn." said Rarn~~ . "ha\
been challenged h!- longitudinal mltl ethnographic~
research. . Treatment of mild mental retardation ha\
been 5~1101nmons Ivith education and the pro%on of
     I
rehabilitative ell\.ii-oliilieiits,"

   Recent research in mental retat-dation ha:, 4101\11
that low-birth\\-eight ant1 premature infallt\ ;IIT 1m1-11 into
a "double jcopardv" situation htacause thr\ ~\we IXH-I~ not
only with lo\\ birth \\&ght and prcmaturr. hut in dkpro-
portionate percentages to tlisad\alltagecl tanlilies. These
children did relatk~eh. ~~11 w11e11 the\- receivecl intensi\.e
home treatment \c?th indkidual care and a wcational
cui-riculum with a Y~I) good teacher-to-child ratio. This
treatment and development program, which is affiliated
with several universities, was implemented in eight pro-
gram sites across the county. 111 most cases. significant
improvements occurred when key components were fo-
lowed: inte~ention, followup, sufleillance, referrals. and
home Jisits. III this study. followup wxs more extensive
than in many other similar intervention studies. Xcross
the board, those in the more intensive intenvntion group
were at an adGwtage. The frequency of mental retarda-
tion decreased in direct proportion to the amount of

inten-ention received. Thefollowupofchildren (through
age 12) showed high risk children had, an IQ of below 85
(borderline intelligence). For those mentally retarded
children who recei\,ed early intemention, only 28 percent
repeated at least one grade bv age 12. M'ithout early
inte1yention. .i:i percent repeated at least one grade by
age 12.

Ann Streissguth, Ph.D.

Children afflicted \vith F.kE and FAS are unable to reach
their full potential due to prenatal alcohol exposure,
according to Dr. Streissguth. These youngsters have
nor~nal intelligence but can't "get it together." They often
suffer from distractibihtT; attention deficit disorder, and
the lack of abilic to focus on important issues. Hobvever.
F.G. she emphasized. is totally preventable. "It's one
thing to pl-spare children for school," she said, "but it's a
bier respollsibilitv to ensure that each child begins life in an
:,
alcollol-frer ~Il\il.oIlIll~Ilt."

  F.-\S depr-ives children ofreaching their potential
,jtlst a5 su~-el~~ as birth clefects do. Holvever, birth defects
arc ohseI-\~able. For example, children exposed to
tl~alidomidc hark, noticeable ph!.sicat defects. F.VS, h!

"FM deprives children of reaching
their potential just as surely as birth
defects do."

124 Parents Speak Out for America's Children


contrast, is a hidden disabilitl,. Because ethanol c~.orws
the placenta free]!,, in minutes the blood lewl of the
fetus is the same as that of the mother. Sw~ptom~ ot
FAS include (1 ) prenatal and postnatal growth defi-
ciency, (2) a pattern of n~alforniation in terms of facial
features (large distance &tIvren eyes, thin upper lip.
and flat midface) and brain composition. and (3) cc'n-
tral ne~~~)u)r s~.atem d\-sfIulction. The tuixollcq)tion is
that all childrrn I\ith F.\S iwc nleiltall\- rrtarded. III
realit\.. olil1.3) ptwwit ai-c wrai-tM: man\ \cith FAS xc
    
borderline intelligent. l-loUr\-cr. all children \\itli F.-\S
are dysfunctional. `.lQi\ iiot tlir fiictor tliat tl(~tvriiiilirs
hov~I\ell a person f~~nctioii~." affirni~d Dr. Streiqyith.
"unclerl\-in,g brain damage i\."

  Ljr. Strvissgutli \tatctl that \ ic-tini\ of F.IS arc at
high risk (mail\. are in\-oI\vd in crinlv). ai1d thy loiig-
tt'r111 col14cqllellcrc of'tll~ pldAm ucY.d to t,c ulltlcT-
\tood.  She brought attention to tlith w~\erit\. a~itl
magnitude of F.IS and F.IE and \trvwd the. ~lr-cd ii)]-
education and earl\- intt77wition.  Shv has rrcri\x-d
mailI. letters fi-oni parents-oiic 01' \vliicli +lic rv;id
aloud--stating, in effect. that 0111' h\\t~`iii tail5 tlit'4t
children. Dr. Strcixyguth adwcatcd ( I ) p~iblic rtluc;~-
tion, (2) professional training, and (3) profe5sioiial
senices. People need education about tht. riA\ associ-
ated r*-ith social drinki+g during pregnaiicl (i.e.. there
is no knolvn safe lel.el of' alcohol esposur~ tllu-ing
pregnant!,). Specifically, Streissguth recotn~neildrd
(1) impro\,ed diagnosis of F;\S and FAE and (2) design
of special programs for children with these problems so
that the)- can find producti\.e places in societ). and are
not failed by society. She acknowledged that rnm~
people simply don't recognize the difference between
brain damage (an effect of FXS and F.AE) and retarda-
tion. She emphasized the need to diagnose !-outlg
children, adolescents, and young adults. M7thout a
successful diagnosis, she said, these children remain in
an environment that offers no help for them.

EXPLORING COMPREHENSIVE HEALTH AND
EDUCATION MODELS FOR YOUNG CHILDREN

.\loderator S1ai-1. Brecht Carpenter of the Commission to
Pre\wlt Infant IIortalitv introduced the panel members.
The nwspdw-son thi\ppanel presentedconcretr recom-
Inentlation~ fi)r inno\xtive 1ra1.s to improve health, rcluca-
Con. and wcial selyicvs d&w-\- b- wnng children.
                       

Edward Zigler, Ph.D.

Ih. Ziglvr. a selMesc~-ihrd "( :ongrcssional gadfl!.." pre-
\txtetl his view on the future of childcare in this
couiitil' and outlined hi\ plan for the School of the
T\\-ent!--Fir\1 (:cntul~..

  As long ago as 19X. Congress recognized the
ilwtl fi)r a natiolial childcare y3tem. In 1971, Congress
paswd legislation that \vould have mandated a national
Iletlvork of childcxc~ wntcw, but the bill Ivas vetoed b)
then presidrnt Sison. Dr. Zigler stressed thatchildcare
is now an cl'en more iinportant national priority due to
tvo particular demographic shifts: (1 ) the dramatic

"We cannot treat children the way we
are currently treating them in the
childcare setting in America and
expect this to be a great nation."


increase in the number of mothers working outside the
home and (2) the increase in the number of single-parent
families. Today, 65 percent of mothers with school age
children work outside the home. The figure for moth-
ers ofpreschool children is 60 percent. Amongwomen
with children less than 1 year old, 54 percent work
outside the home. Moreover, the Department of Labor
estimates that, by the year 2010, labor shortages will draw
even more mothers into the work force. Today more
than 25 percent of all American children and 50 per-
cent ofblackchildren grow up in single-parent families.
  Research 011 the impact of daycare on children,
Dr. Zigler noted, has shown that good dayare is good
for children and bad daycare is bad for children. M'e
know how to provide good care, but we don't want to
pay what it costs. "The general state of childcare as
experienced by children in this counts is abysmal," he
stated. "This country is getting what it pays for." The
average annual turnover in childcare facilities is about
40 percent. As many as 90 percent of daycare centers in
the U.S. are completely unregulated. No national
standards exist, and there is wide variation among
States. Even where standards exist, they are too lax to be
of much use. Based on studies recently completed in
California, Dr. Zigler estimated that about one-third of
centers in this counts are so poorlv managed and the
qualit) ofcare is so low that children are being "serioush
compromised." He went on to say, "We cannot treat
children the way we are currently treating them in the
childcare setting in America and expect this to be a
great nation."

  &Uthough the 1990 Childcare Block Grant has
been hailed by many as a victon for childcare reform,
Dr. Zigler expressed doubt that it will have any signifi-
cant positive effect. Seventy-five percent of the funds
allocated to the Block Grant are earmarked for poor or
nearly poor families. The middle class, which is equall)
in need of good childcare, will see almost no benefit,
and Dr. Zigler expressed his fear that this situation ma)
lead to backlash against the grant and against childcare
reforms in general. He stressed the relationship of
good daycare to achieving the President's six National
Education Goals. "Five lousy years of childcare will

126 Parents Speak Out for America's Children

guarantee that the\- [children] tvill show up at school
guarantee that the\- [children] tvill show up at school
not ready to learn."
not ready to learn."
  In Dr. Zigler's opinion, the system as it currently
  In Dr. Zigler's opinion, the system as it currently
esists does not lvork and cannot he made to work.
esists does not lvork and cannot he made to work.
Instead of tt7ing to retrofit the current system, he
Instead of tt7ing to retrofit the current system, he
proposes a whole new system that he calls the School of
proposes a whole new system that he calls the School of
the Tlventy-First (:entur\.. The program, as Dr. Zigler
the Tlventy-First (:entur\.. The program, as Dr. Zigler
envisions it, will incorporate the following key features:
envisions it, will incorporate the following key features:

*







*









*

Two systems will exist: first, the formal, Y-month,
8:00 am to 300 pm school, and second, the 12-
month. 7:OO am to 9:00 pm school.

Children will enter the system at the age of three
for full-day. developmentally appropriate school.
In commmlities that already have Head Start
programs, Head Start could simply be blended
into the system; parents with earnings above the
poverty line will pay an enrollment fee.

Before- and after-school childcare will be pro-
vided for children aged 6 to 12.


Each family will be assigned a home visitor who
lvill conduct developmental screening. offer sup-
port to parents, etc.

All family daycare programs will be tied in to the
school, which will offer support and periodic
training sessions for childcare providers.

The school will contain a comprehensive informa-
tion and refer-al system that can direct families to
appropriate health and social senices agencies (such
as immunization clinics or night care providers).

  Successful pilot programs to build Schools of the
T\vent\-First Centun. alreadr. exist in several States,
including Missouri, C:onnecticut. Colorado. \l'\oming,
Texas, Kansas. Idaho, Arkansas. and Mississippi.

  .-\nother proposal Dr. Zigler is attempting to
present to Congress is the "(:hildren's Allowance for

America."  This plan would allow a new parent to
\\-ithdraw up to S.?,OOO from his or her o\vn Social
Security account to allow the parcwt to stay home or to
help pay for good childcare.

Nancy Van Doren
President, Tmveh:r Companies Fouwlntion
Director, ~V~tionnl and Community .-lffir~ LXvisio,7
Thp Trcwe1cr.r Cornponies

Ms. Van Doren spoke on behalf of the Travelers Com-
panies Foundation about the role that businesses and
private organizations can play in securing good care for
children and pregnant women.  The Travelers are
headquartered in Hartford, Connecticut-one of the
poorest cities in the country, located in one of the
richest states.  Disproportionately large numbers of
children in Hartford are born to teenage mothers, are
underimmunized, and have asthma, attention deficit
disorders, or learning disabilities. All of these condi-
tions are usually preventable.  As one of the
organization's social responsibility commitments, the
Travelers are working to improve the health ofchildren
and the prenatal care of mothers in the greater Hart-
ford area.

  M71en a new children's hospital was proposed for
Hartford, the Travelers commissioned an independent

analyst to conduct an evaluation of Harti&-d's health cart
delivevneeds. The consultant found that,while Harttijrd
would indeed benefit from haling another- hospital, it was
even more important to increase availabilip of priman
and preventive health care for children and expectant
mothers. Ms. \`an Doren said that it has been a challenge
to persuade contributors and decisionmakers to redirect
their limited resources fi-om "glamorous." high-lisibilih
projects such as new hospitals to more mundane (but
effectivy) applications such as prenatal and perinatal
health clinics for low-income mothers.

   11s. \7an Doren said that she is motivated in her
efforts b!. a mixture of rage and shame that people in
her communit\. are unable to have even their most basic
needs met. She urged the audience to let their rage and
shame move them to act and to search for opportunities
to push for the redirection of resources to the places
\vhere theI. can do the most good. Hartford has been
successful $0 far in its drive to reallocate resources from
prisons to scl~oola, and from neonatal intensive care
units to preventive care. Ms. \`an Doren emphasized
the importance of prel,enting health crises rather than
remedving them.

CHILDREN WITH SPECIAL HEALTH CARE NEEDS:
LESSONS LEARNED

This panel offered wluable insights about setting up
systems that address the problems of children with
special health care needs. The speakers offer three
perspectives-all key to successful programs: (1) par-
ent empowerment, (2) program-level development,
and (3) State-lel,el involvement. The panel uxs moder-
ated by Rear Admiral~Julia R. Plotnick, M.P.H., R.S.(:.,
who holds the rank ofAssistant Surgeon General and is
the Associate Director. Division of Senices for (:hildren
with Special Health (;arr Needs. at the \f;irtTIld a11d

(1hiltl Health Kureau.


Ms. Robinson se17w as a parent/child advocate at the
Robert Ta!4or (:otni-ntulit!.-kno~vn to he the largest
public housing divisiott in the I_`nited States-w+et-e
she has resided for more than 20 >`ears. Her video
presentation highlighted the dail!. struggles of a com-
munity with high& concentrated and severe povert)
and its associated problems: extreme overcrowding,
extremely high infant mortality and morbidity rates,
high incidents of low birth iveight, high percentage of
teenage tnothers, and high rates of violence. The
commrmi~ is further crippled b!, threatened famih
unity; psychological and phvsical absence of fathers;
anger, depression, and despair: and social isolation.

  11s. Robinson`s determination to help herself and
fellow community members led to her advocacy work on
the Beethoven Project at the Center for Successful Clhild
De\,elopment. The (:entet- protides cot~irntuni~.-based
senices that address the health, education, and social
needs of the coniniuni~. The (;entet-`4 philosoph\. is
based on two beliefs: that each individual has the abilip.
toachie~-eandbrindepende~ttanctin controlofhisot.ht,l-
life, and that strong fLnily relationships are important.
Set-r-ices are tailored to the needs ofindi\idual titmilies. in
a n.pe of holistic set3icr plan.

  Instead of' focusing on the barriers to itnprwing
communin. life. said 11s. Rohittson. the <:rnter builds on
community strengths to deal lvith the problems. From her
experience at the CIenter, 11s. Robinson shared t~vo basic
problems and approaches to sohing them. ( 1 ) Economic
entrapment and iwlation leads to a nlolltll-ttr~llo~ltll
sttxtggle to meet basic needs. To address this problem. the
(23iter offers ongoing employment training, coutwling.
and I-efcr-t-als. The Center also provides other tools to
make lift- rasirr and help people to help themselves.
Project staff at-e empathetic rather than y-mpathetic, and
support groups abound. (2) Educational opportuni?. is
lacking in the communit\: Project staff help parents to
become better persons as well as better parents. The
Center recognizes that parents who feel powerless and/or
inadequate as parents don't read to children. Staff

tn~nnhet-s stress the importance of reading to their
children and other approaches parents can use to
foster school success.  The staff encourage strong
parent-child relationships and emphasize taking pride
in the child's academic achievement.

  Finally, parents are taught to become accountable
and take an active role in their children's lives and in
their community. Said Ms. Robinson, "Healthy parents
read\, to learn will provide LB with healthy children
ready to learn."

Polly Arango

Ms. .It-ango introduced her audience to Sew Mexico
from the \-ielvpoint of Sew .\lexico's parents of children
\vith special health care needs lvho have been working
to impt-o\e the State's medical and educational systems.
\Vhilc Sew Llvsico i\ a State ofgreat physical beau? and
diwrGt~-. it also faws many challenges:

It Ont'of'sc\en Sew Slesicochildt-en lil,esin paver?.

Ir Stv Slesico ranks .`ilst in the Sation in the per-
ccntagr of \vomen rect%ing prenatal care.

+ The State's tern suicide t-ate is dismal.

  Thet-rfot-c. Sew Mexico's families have arranged
to makt~ the lives 01.1 heir children better, one famil!,and
oiie issne at a time.

  11s. .\rango became involved as an advocate j\hen
she and her family learned that their youngest son,
Sick. has cerebral palsy and developmental delays. As
Ivith many middle-class families, the .-\rangos discov-
ered that fe\j- avenues existed to assist them as thev

stt-uggled to pay Sick's medical and preschool bills. For
example, although Nick was adopted, his adoption
occurred before the emergence of adoption subsidies.
Sick is an LXnierican Indian, but his birth parents chose
not to enroll hitn in the tribe, a decision honored by
Nick's adoptive farnil!,. & a result, Nick is not eligible
for services through Indian Health Service or the Bu-
reau of Indian Mfairs. Because they were decided])

128  Parents Speak Out for America's Children


middle class, the Xrangos could not meet income guide-
lines for the State's crippled children program.

  To deal with her frustration. Ms. Arango joined
with other parents to found a statewide organization
called Parents Reaching Out (PRO) for any and all
families with children who have chronic conditions.
disabilities, or illnesses of any kind. Twelw years later.
PRO has 500 members ~vho at-e from e\w?. pat-t of the
State and every ethnic background and ~vho have chil-
dren with many challenges. Man!. of' PRO's membet-r
are the professionals, friends. and relations of families
\vho ha\,e children with special health needs.

  PRO began as an organization to provide peer
support and information to families. and this fitnction
continues to he the heart and SOLII of its ef'fot-t5 to&t\.
Holye\-et-. PRO's parent\ soott tackled Ijiggct. ihsttca
such as \\riting rhc lcgi&ttiott that created a (;omptx-
hensive High Risk Insut-ancc Pool for Sew Nrsico. The
list of issues they have addressed goes on and on. The
following elements have contributed to their success in
changing the s\xtem:

* Ordinal parents have united to form a common
bond.

* They have forged strong partnerships\vith health.
education, and other professionals.

* One parent usualI!- has risen to the forefront as a
symbol of the movement.

* Public and private agencies have supported the
  2
campaigns Mith technical assistance and in-kind
contributionsasawayofenlighteningandeducat-
ing the public.

+ At least one policymaker who is willing to "bleed
and die" for the issue has become involved.

* The highly visible work and people are supported
by a broad-based grass-roots community of fami-
lies and professionals who voluntec~r at hotne.

Sr Evenone remembers the bottom line: improving
the health of children and ensuring that their fami-
lies can raise them with dignin., rrspwt. and lo\r.

\Ihen 11s. McConnell's child required an osygtw tank.
she had to learn about health cat-e svstems and ho~v IO
make thetn\vork. Because ofherexperience, ILlc(~ot~ttcll
~vas hired b\. the Michigan Department of Public Hwltlt
to work on a peer level lvith "weigh?," issues for a ttrwl\
creatrd parent participation program. The program,
horn out of` decentralization at the State level, nccdtd
more parent involvement at the local level.  Ms.

\lc(Ionnell dexribed the initial ambivalence of` one
sup~r~~iso~~ who did not understand the need for parent
in\ oh t' mrnt at the State le\.el. Holvever, as the program
gained \vide acceptance, she gained this pet-son's
full wppo1-t.

  \Is. \lc(:onnell's job was to build relationships;
create task forces; make appro\.als: and set policies for
hospitals. physicians, L md home health senices. She is
proud of the f:nct that all hospitals in her State now tired
pal-en t ad\-isot-y committees and parent staff. She stressed
the benefits gained from building relationships among
parents, communi~. and Cgoverntnent: the establishment
of enormous power bases that took action when funding
cuts 1vet.e threatened. They influenced senators so that

"Families have both an immediate
vested interest to get things changed
and the freedom to act. . . ."


l);trcttt~ receij-ed needed appropriations. The!, helped
est;thlish boilerplate in law that required that t`atnilies and
conseqttences to them be considered before pt-OgtTttllS
are changed or funds are Gthdt-awl. In effect. the legislsladon
mandated State government to work with bnilies.

  Ms. McConnell noted that parents are willing to take
t-i&s to support the continuance of needed sen-ices.
"Even if they are not sure the steps at-e right," she said,
"[parents] are \%illing to follow their instincts."  Ms.
McConnell introduced four strategies to help families
meet children's special health care needs. (1) Support.
State agencies should nurture and facilitate the develop
tnent of statelzide coalitions of and support groups for
persons with disabled children. State agencies should
encourage refer]-dls to these groups. Financial sttpport is
also vet-y important. Parent consultants must get reim-
bursed for their time and expenses. ,~wther t\pe of
support involves helping parents acquit-e a \vealth of
knokvledge. They need information, for example, about
who in the communi~ has had a bad experience lvith
clinics, etc. (2) Dissemination of Infi)rmation.  State
agencies must establish effective, routine mechanisms for
receiving information from parents and parent support
groups and for disseminating information to them (Ltm-
il! support nenvorks). .%gencies must pt-o\idc families
with clear written information describing programs. ser-
\-ices. and mechanisms foracces\ittg those senicrs. .+tt-
ties must prwide read\ access fi)r parents to unhiaaed attd
complete information from their child's records.  (3)
(:ollabordtion. Fatnilies that participate across the State
must represent the culn~ral and economic di\.et-sit\. of the
State. They must participate fully Ivith professionals in
polic! development, program itnplementatiott. coot-di-
nation of senices. and e\.aluation of programs. State
agencies must financially support parents involved in
these activities.  (4) Integration (the ultitnate goal of
senicrs). State agencies must have a written poliq that
reflects the pivotal role offamilies. Integration recognizes
the concept of fdmil>,<entered senices. Howe\,er, parent
inptttis needed toensure thatsenicesarefdmil\centered.
Therefore, tnechanisms for parent and professional col-
labordtion should be used routinely at a11 le\,els and in all

program areas.

  In closing, Ms. McConnell shared the following
"lessons learned" frotn her experience: (1) Families
have both an immediate vested interest to get things
changed and the freedom to act (they haye no boss in
this endeavor, nothing to lose, and everything to gain).
(2) Concepts trickle down to benefit health care for
children in general, not just for those with special
needs. (3) Financial support and encouragement are
Lital. (4) Xdvocacy can result from one-on-one relation-
ships, either parent to parent or parent to professional.
(3) None of the panelists are specialistsin special health
needs. In other words, parents should be recruited on
the basis of their commitment. not educational de-
grees. (6) Gaining new territory is worth the risk.

PARENTING: THE CRITICAL ROLE

.\s she introduced the speakers on this panel, Modera-
[or Bat-hat-a Hriser of` the La Lechr League stressed the
importance of parent inwl\,etnent in children's lives
both at home and at school. Xs children's main support
s\.strtu, first teachers, and caretakers, parents exert a
lifelong influence on their children's development.

Ann G. Cagigas, R.N., I.B.C.L.C.
Lnrtntio)~ Cn~~srllln~~t

For this panel's opening presentation. Mrs. Cagigas
shared some of her experiences as the mother of three
childrett. t\voofwhom had severe sleep apneaaschildren.
;\s infants, all of her children had to be constantl!
monitored lest the!, suddenly stop breathing.  Mrs.
(:agigas, a former emrrgencyrootn/trauma nurse, found
herself wholly devoted to a new, 2+hour, acute care
detail at home. Hereldestdaughter, who is now 1 Syears
old, has fought se\,eral tnedical problems, including
thyroid f:nilure and Tourette's Syndrome. Mrs. Cagigas
said she beliel,es that the commitment she and her

husband made to their children and their determination

130  Parents Speak Out for America's Children


to stay activy in their roles as parents carried them
through some difficult times.  She also stated that
breastfeeding her children as infants helped her to feel
connected to them later in life and kept the maternal
bond strong even driritig \~n. stressfiil pet-iods.

Mildred M. Winter, M.Ed.
bkQCWtillQ Dim-for
PCl,-QlltS (1.5 ~QfldlQV\ .\\rtiOHfl/ (,htfV
i'rri71Qr:sit~ ~~[.\lic.tou~i St. I.orris

Ms. \Viiitcrs presettted the tiiethodolo~gy and histot? of
Missouri's Parents as Teachers program. (~l~iltlrrtt are
hot-n learning. she said. "hut the~~doti't cotiir~vith itistt-uc-
tions." .& children'\ first attd most itifliitwtial teachers.
parents should help theit- children Itw-n all the! GUI. Tht
P;1rents as Teachers program help\ parents xi\ e cltildrcw
"gooc~ beginnings."

  The ICC\-. according to 11s. \\-itttt'r, is to rcaclt
children ah earl\. as possible. \\.e Ieart1 tnot-c ;I\ ( hildrett
than wc do during aiiv contparal~l~ pc~riotl of`out- lkc'4.
To make the most of` this fertile learning prriod. the
Parents as Teachers program promote4 the tlc\~~lop-
ment of a parent-school partnership. X home visitot
pt-ogratn bt-in<gs trained parent educators into the
children's homes to walk Ivith parents about opportuni-
ties for the child to learn, things the parents can do to
stimulate the child's imagination, and lzhat skills the

"As children's first and most
influential teachers, parents should
help their children learn all they can."

child should be dewloping. Home visitors also act as
listeners and offer the parents support and a s!mpa-
thetic ear. The Parents as Teachers program involves as
n~an~famil~tnembersaspossibte, including~~thet-sand
grandparents. .&I? f'amily is eligible to enroll in the
program. and special efforts are made to attract low-
income fatnilies and teenage mothers.
  To date, four independent el-aluations of the pro-
gram have been conducted; all have shown that children
whose families participated in the Parents as Teachers
program to score higher in language development. intel-
lectual de\-eloptnent. and social cle~elopment than chit-
drcn ~910 were not i>vol\-ed in the program.
  Thirteen states. ittctuding l\lissouri, have Parents ;is
Teachers p~-og~x~~is in place. .\Iatty use fundsfion~ Even Start,
(:hapter I. <:hapter II. childt-en's ttw+t hinds. private cotp~~t-
Con\ ;u~l fi~tuntlations. and public set~ice gwups such its the
Ki\\;utis Club. 111 closing. Ms. \$inters said that while the
Parents it\ Teachers proqtm does not solve all of the prob
lems that f&e chilclren ant1 their families today, she and her
organi/ation are proud to be part of the solution.
  Following Sk. Lj?nter's presentation, a member of the
audience [Sandra McElhany of the National Mental Health
Association] urged attendees to write their representatives in
(Congress to ask them to support an amendment to the Bill for
Educational Reseu-ch and Education thatwill be proposed b>
Senator Kitt Bond of Mssouri. The amendment, which has
the support of Senators Kennedy (Massachusetts), Dodd
(Connecticut), and Pell (Rhode Island), would grant States
fitnding-$20 million per year for .3 years-to start or expand
Parents as Teacher programs.

Mary Louise Alving, M.Ed.
Project Diwrtor, Pormt Ltmhhip Training
Citizms Educnfion Gnfpr

Ms. Aking presented a set of proven guidelines fot
setting up parent involvement programs. Although it is
widelv known that parent involvement improves
children's self-esteem and school performance. 73
percent of parents still do not get involved. Ms. Xlviug
offered wa\`s to increase parent itnvlvemen~ in school
programs. The Parent Leadership Training Project at
the (:iti/etts EdItcation (:enter begat1 in Seattle in 1986


"
. . .parent involvement improves
children's self-esteem and school
performance. . . ."

to address the needs of !&grant f'nmilies. Since then, it
has expanded to include families and schools of all
backgrounds.

  Ms. Ahing first talked about the four myths that
people use to sal'that parent involvement is not practical.
The first was that "parellt involvement" means volunteer-
illg for school activities. .\ls. .-\l\ing disap-eed, ca!ing that
a parent who helps his child with her home~\w-k. or who
takes an active role at school hoard meetings. is iit lea5t a4
involved as the volunteer. The second mvth is that pawllts
don't have time to participate in scl~ool activities. Sht
pointed out that parents do COIW to school \~Ix~n the\
have lvhat they think is a good reason (for example.
debates about cc?ndom distribution in high sc11oo1~).
"Parents are hard to reach"~vas the third nn.th. Yls. .\l\illg
asserted that it is the schools, not the parents. lvho are
m~welcoming. The fourth m\-th she confronted \vas the
"at risk" classification of families from certain csthliic
groups or economic levels. She said that all famil.ies are at
risk at some time. and that these kinds of classifications
promote division within the communiE.

  Ms. Alving presented eight "do`s" for successful
par(;nt involvement programs. These were repeated in
the video that \sas shown at the end of the session.

+ All activities and programs should be based on the
                                

idea that all families have something to shark.

* Parent im~olvement programs should include
members of other programs--such as Chapter I
and Head Start-and should collaborate with
other programs.

Ir Slost successful programs focus on the child's
teacher. Parents want to meet and get to know
their children's teachers. Teachers are often the

best way to reach parents.

Ir The program should he coordinated by a team; a
~oocl program lvill rapidf expand to a size where
it simple cannot be administered by only one
person. Teams should consist of the school prin-
cipal, two parents, tlvo teachers, a school district
represrntati\,e. a business/comlnulli~ represen-
tative, a social ser\-ices professional, and a cul-
ture/language specialist (as- required). Before
the team begins planning, they should attend a 5
day training session.

Ir







*







*









*

Succtwful prograrns ahvays allow room for adjust-
ment. Evcrv scl~ool is different. and programs
must be adapted to lit thrir audiences.

Teacher training is an important part of parent
iliwhwiicnt programs. Teachers often have no
training on ho\\- to pork \vitli parents.

Ongoing fiinding for parent involvement pro-
~T;lIll~ 410~11d be olmiJlrd.
.7                 Too often, when
funding rt111s out. the parent invol\.enient pro-
g:1-an1 goes with it. Begill to lvork for permanent
funding earl!-.

.

Buiiding a developmental e\-aluatioli process into
the program means that staff can evaluate their
progress at an!. point and can make any necesy
acljustm&ts.

Letitia Rennings, M.S.
Evrn $0 ft Coodiru7tor

Last to speak in this session was Ms. Rennings, who
discussed the Even Start program. This family literac)
program has ir?creased in Federal funding from

132 Parents Speak Out for America's Children


$14,820,000 in 1989 to $70 million in 1992. President
Bush is recommending that funding for the 1993 fiscal
vear be $90 million. There are c7trrrntl\- 240 f71nded
programs, including 9 Migrant progratns. Even Stat-t is
open to children front birth thro77gh agv wven living itt
a Chapter I elementat:, attendance area and a parent
who is eligible for adult basic education.

  Even Start is composed of three cow cotnpo-
nents-parenting education. early- cltildl7ood etl71ca-
tion, and adult education. The projtacts build OII tG;l-
ittg progratns in the cotntnltnit~.. i;71cl1 a Head Start,
Chapter I, Ch;7ptet- II, ad77lt education. progratn\ fot
children u-ith disabilities, .JTP.L and .JOBS.  Thy
progtwn's goal is to break the c\.cle of illiteracy tliar
plague5 so tnati~. .-\tiwt-icati fattiilirs.

  The brnefits of E\wi Start's foc714 on litety at-e
inativ. Parents \vho Icarn to read dcwlop att ititrrest in
school, and sonic of theni choow to go back to scl~ool

ac a result of their involvement. In additiott. cItiIdtx*tt

feel pro7tcl of their parents and \\orl\ to cw~ttlatc tItc.ir
parents acadeniic success. In somr projects, p;~tx~tIs
lrve f in-med their 0~11 support networks ;III(\ 11;1\x~
learned the importance of proper health c;w and
n7ttrition. talking and reading to their childrw. att(1
scning as good role nwdels. The self-estccwt ;71td
cotifidcttceofpxticipants-adults andchildt-rti alike-
is great]! increased.

  The results of first !-eat- ( 1989) pt-ograttt r~xl~~a-
tions sh01\ that `70 pet-cent of fxmilies set~td ltavc
ann71al ittcome\ of. less than 510,000. Evtv .St:ur ha\

rcacli~d 13.000 adults ant1 48.X)0 children acros4 tht
co7tntt-v. The nlajorit~-ofad7tlt participantsaw brt\vcac.tt
            
the ;lcrC% of 2 1 and 29.
   h
  To cloce her presentation. Ms. Reriningsoff~t-ctl rhr
a77dietice sonic specific ill7tstrations ofthr good Even Start
can do fix- fiumilies and for Ivhole conitn7tnities. She


llt-iefl\- drsctii~ed three stlcccssfitl pt-ogratns-one itt a
tt.;tiiet- park in Fort (Zoiiitls. (kAorado. one it1 a \.etT poot-
cotntnuttitv in Snt~arl~iile, Tennessee. and one in the town
of'Hidaigo, Texas. on the Mesican border. Each of thrse
prograni\ has tailored its set-\ices to fit the specific needs
of the cotntnttnit_\ and lamilies it sexes. Recognizing that
fanlilies' basic needs initst be nlet before the! can begin to
;tpph, thetnseives to stttd$lg, thr (Colorado progtxn
&et-s not oni!. (kneral Eqtti\-alettr!- Diploma (GEL))
trainingfot~patw~ts. btlt also teachesl);tt.etltitlg skills, basic
nutrition, and h@xie, anti coordinates a food donation
progratn. In Sneachiiie, where nxttn people hale never
been inside a school bttiiclit~g, 1.50 f:,\tniiies--ainlc)st t7xy-
otle in the count--is inwived it1 Even Start. 1lot-e than
.X0 people attended the progratn's spring picnic. rvith
rvenxme in the coti~tii7ttiitx participating.  The tmvn
sheriff cooked. and the staff of the bat-bershop gave free
haircuts-wine to 1vottttw \vho had tte\w had their hair
cut bv sotneotle outside their imtnediatc farnil!. .-\t the
end of the )`ear. -lH ~vottwn twroiied in Evm Start had
passed the GED and IO of them recei\wl drivers` licenses.
  In Hidaigo. Tesas. the Ewn Start progranl setTes
;I cotnttt7ttlity that is nlo\ti!- Hispanic and poor: the
faniiiies participatiti, 0 in Earn Start had no pitttmhin~o~
server svstetns. Their hotttrs t-esetnhlrd small toc~isi~ed~.
Seat+ 1'10 pat-etttsand 130 children atx~etiroilecl iii the
progratn. Before E\wl Start catne to Hidalgo. tnan!.
\vomrn. who had had evett less rdttcatiott than thrit
husbands. lvere completely illiterate. 51atl!, families
\\`ere entitled to food assistance, but could not negotiate
the system because they could not read. The Hidalgo
Even Stat-t home visit has proved the most effective
titeatis of`itiipro\~ing families ' iiterac\. skills iii ;I cttitrtr-
ally srnsiti\.e tnannt`r attd of'assistitlg families in dealing
uith social set-i-ice agencies.

CHILDCARE: TWO PERSPECTIVES

(:hiidcarr C;III be \ie\veci frotn two perspectives: that of
the parents and that of childcare providers. This panel.
tuodet-ated by Barbara A. M'iller, Ph.D., Public Affairs
Director for the National Xssociation for the Education
of Young Children (NXEYC), pt-esentrd the results of
t\vo national childcare s7113ty, one from each perspec-
tive. Dr. L\`iiier noted that these projects, which u'ere
separatei~ funded and designed, are ttttiqtte because
the!- highlight partnerships (collaborations). The first
stud\- \vas the National Childcare survey sponsored 1~1.
S.kE\rY: and the Xdtllittistlatiotl ott <~hiidt-en, Youth,
and Fanlilies. U.S. Departmrttt of Health and Human
Setlices. The stud!. ttwcl a tviephone sutTey of parettts
cleGgtted atttl anaivzeci 1~1. the Urbatl Institute. It ex-
piotwl gvnetxi clttrstionsahottt childcare at-rangetnents

134 Parents Speab Out for America'\ Children


and included substudies of low-income families and
militay families. The secottd stud!-. the Profile of
Childcare Settings, was sponsored by the Department
of Education. \ The study dealt with the supple of
childcare services, use by low-income families. range of
senices, and qualit!,.

Patricia Divine-Hawkins
Publir .4@iry Co-Dimtw

.Ycttionnl .-issociatio~~ ,Jor the Educntion cf kbuug CXiltiw,l
Ms. Divine-Hawkins reported imtnense change Gth
respect to childcare in this cotmtt-~ in this generatiott.
In the 1990s. man!' mothers are lvorking. resulting in a
large proportion of' children in preschool and ;I large
number of children caring for thernsel\~r~.  She also
reported a shift from informal toTGtt-d formal childc~art
centers and homes.  (ivi5us studies of part~nts and
national studies h>. the hdtttinistratiott on (:ttildrett,
Youth, attd Familirs point touwtl these conclusion\.
She noted that the cot~st~met- studie5 of 19% through
1976were prototvpesofour understandingofchildcare.
but the! did not include f:ntnily daycare providers.

  r\ccording to Ms. Divittc-Hawkins, social policies
of the 1990s are oriented more toward children and the
family. Childcare is a central component of etnplo!ve
benefits in many companies. Head Stat-t created nrv
partnerships between Federal, State. and local govern-
ments. The continuitv between earlv childhood educa-
tion programs and elementary school has enhanced
and eased the transition between early cltildhood and
kindergarten. However, these social factors create a
complex situation and thus a need to look at childcare
issues more holistically.

    Ms. Hawkins-Divine related that N;\EYC's research
examines how the supply of and demand for childcare
work together. It is the first research that (1) studies the

range ofoptions for different families in different types
of situations, (2) explores characteristics of individual
families, (3) develops a comprehensive database with
individual data tailored to individual circumstances.
and (4) examines socioeconometrics.  NXEYC also
emphasizes the importance of partnerships in addrew-
ing childcare issues.

Dt-. Hofferth was the principal investigator of. the ~a-
tional Childcare Sunny. which explored sttpplemettt;tl
caw for children (center care, family daycare, in-hotttc
cat-e. care b\. a relative. or no supplemental care). The
components of the sttt~e\. included the n~~tntbet- of
households l\ith children under certain ages, ttumbet-
of children enrolled itt da\care, a parent suney, and ;t
provider WIVV. The sttt~-c~ revealed a high pet-centagt
ofsttpplrttletttal c;w and a major shift in the provider\
of ~llpplelllental cat-(`:  more and more children ~vho

receive care out of' the home are enrolled at centers AS
opposed to wcei~iiig care at ltotiws of relatives. The
sunr! examined primat? care for the )wungest pre-
school child by income, for employed mothers. Enroll-
ment in center-based prograttts has increased particu-
larly among lolvest income families whose childrett are
placed in subsidized programs and who receive direct
financial assistance. etc. The \vorking poor and low- to
middle-income families, by contrast, are participating
at a louver rate in center-based programs.  Dr. Hofferth

said it is noteworthv that the cost of care has not
increased significantl!. relative to the cost of living. But,
she affirmed. 35 the high-income familiesget tax credits
and low-income families get assistance, the middle class
gets squeezed out.

  Dr. Hofferth's research shows that parenti learn
about childcare arrangements for the youngest child
through relatives. friends, and neighbors (informal nrt-
works) and ft-om referrals. The most important factors fi)t-
measuring daycare are quality (above all else), reliability.
teacher training, and student-ttrteacher ratios. The SIN-
veyfottnd thatparentsweregenet-allysatisfirdwith daycarr
arrangements. One-fourth oftheparentssrtrveyedwanted
to change arrangements. Of those, one-half wanted to
switch to childcare centers. Childcare centers are the
preferred alternative. Intel\iews wi\ith SII~TV\~OI~S S~OISXY~
that some centers were regulated, and others were ttot.
Sottrrgttlatrd cetttet-4 ottt~trtmberetl regulated centus.
S0ttre@ated ccntet-\ differed flrottt regulated one4 itt


that the!, lvere smaller. had shorter operating hours,
charged less. and bvt`re not run bv professionals. The
major findings were that, during the preschool years,
more and more children are in childcare centers and
some, especially the poor, mav be suffering.

Elizabeth Farquhar, Ph.D.
Ptyqwl tt1 `4 tz n!yst
lkf,ntfttifwt of Educntiott

Dr. Farquhar talked briefly about the Department of'
Education's role in creating policies and studies
concerning earl>- childhood education, childcare, and
family education.  The Department of Education
supports Chapter I creation of Even Start for adults in
need of literacy skills. Preparing Young Children fat
Success is a Department of Education program that
prepares children for schools. The Department also
sponsors the Profilr of Childcare Settings Studs. The
Department also collaborates efforts with the
Department of the Health and Hunlan SelTices. Since
the 198Os, the Department has lvorked \vith the States.
who became active in de\.eloping preschool programs.
"(:ollaboration." Dr. Farquhar stated. "is \`er\' effective in
these studies."

Ellen Eiiason Kisker, Ph.D.
.%tliot~ I&wc1rchrt
.\ln thma t im Poliry Knrcrt~rh, It1 c.

Dr. Kisker, who directed the Profile of (~hiltlcart~ Settiilg.\
Study, described her extensive research on the supply of`
childcare for preschool and school-age children and on
childcare utilization bv low-income mothers in terms of
two aspects: availability and qualiv. Dr. Kisker discussed
availabilit\ in trrms of formal earlI, education and care at
centers and at regulated farnil!. daycare progmms. She
found that the number of programs has tripled and
enrollments have quadrupled since the 1970s. She con-
firms that utilization rates are high and that most \-acan-
ties are concentrated in fewer than one-half of da\,care

facilities. Ho\ve\-er. more infornratioll is needed from
parents to determine if shortages exist in specific areas for
certain tl\-pes of children. Dr. Kisker noted that not all
programs provide all services. As a starting point, one can
l(,ok at adlnissions policies and determine whether the

f'ncility accepts infants, children who need futl-time ser-
tices. and handicapped and/or sick children.

  In terms of quality, Dr. Kisker noted, daycare
centers can take manv forms. "A davcare center that is
considered quality," said Dr. Kisker, "promotes child
development. . You can't assess childhood develop-
ment by individual child, but there are certain indica-
tors of qualit!,." These indicators include (1) average
group size, by various ages (look at the various laws
pertinent to the regulations); (2) average child-staff
ratios, bv various ages; (3) teacher qualifications, b\
type of degree; (4) teacher turnover (profit versus
nonprofit), and (-5) parental fees (not changed since
1970s if adjusted for inflation).

The Childcare Settings s&d? led to new childcare
policies. The 1990 baseline data lvere used to assess
what has happened since the early education initiatives
\vere developed, and programs have since been
implemrntrd. To illustrate Dr. Kisker's statement, Ms.
Divine-Halvkini; shared that 32 projects in 32 States have
e\.aluatcd the transition of Head Start graduates over
the nest three grades, assessed their progress, and
tlet~rmined under Ivhat conditions they progress.

HEALTHY START, HEAD START, EVEN START,
AND WIC: INTEGRATING HEALTH, EDUCATION,
AND SOCIAL SERVICE PROGRAMS

L\`ade Horn, (Commissioner of the Administration for

(Children, Youth and Families. sewed as moderator for
this session on collaboration among various health and
social senice agencies.

A. Kenton Williams, Ed.d
.-\ssociate Cornrnissionn
HPCMI Stcu-t Bu,ucc u

"Head Start is alive and kicking because itworks." So Dr.
M'illiams, the newly appointed Associate Commissioner
for the Head Start Bureau, opened his discussion of the

136  Parrnts Speak Out for America's Children


Head Start program. Head Start is a comprehensive
child development program that works lvith the whole
child to promote self-esteem, education and literac!-.
and health through four channels: education, health
services (including medical, dental, psychological, and
nutrition), social semices, and parent involvement.
President Bush has recommended that Head Start he
allocated $600 million for the coming fiscal \~ar. Head
Start is proud of its cooperative I-elationshipc\~ith other
programs and agencies. including the Health (:are
Financing Xdministration. the Public Health %I-\-ice.
and the Department of Edlwation.

  Dr. M'illiams said that he is happv to be tvorking
with cuch a successful p~-og~-am and nanwd the fi,llo\v-
in? priorities for Head Start in the coming yw

* To better se17.e prrgnant uw1ne11 and to provide
optimal prenatal care to keep mothers health!.
and to help them bear healthy children.

* To maintain continuing relationships with pri-
ma? care physicians.

* To improve clients' access to secondary care.

Ir To provide referrals to appropriate psychological
counseling, substance abuse treatment, etc.

* To reduce the number of low-birthweight babies
and to reduce the infant mortalitv rate.

* To improve clients' understanding of wellness
and increase personal responsibility for health,
including cessation of cigarette smoking, alcohol
or substance abuse, etc.

Donna F. LaVallee, M.S.
Nutrition Coorclinator

,Yew I'isions for.Vezuport County

Dividing her work week between M'IC and Head Start in her
job as nutrition coordinator for this program in Sewport
County, Rhode Island, Ms. LaVallee had man!- insights
about how to integrate efforts between these programs.
  Because N'IC and Head Start seme the same popu-
lation, both pro<qams and their clients benefitwhen the!
work together. his. L>aVallee offered many simple wggrs-

tions to help foster collaboration behveen local M7C and
Head Start offices, such as open houses, cross-referrals,
membership on each other's policy committees, guest
speaker exchanges, and assistance in program evaluation.
Because M7C and Head Start have so much in common,
they can share many things, including resources, cospon-
sored clinics and health fairs, joint newsletters, all-in-one
application forms, community needs assessment data,
and more. Ms. L.a\`allee urged program staff to "commu-
Ilicate, cooperate, and coordinate."

Thurma McCann, M.D., M.P.H.
Acting lAmfor, (?ffp of HecclthJ Stnrt
He<~lth Ke..tourre., nnd Swuires .-idminist,ntion

Dr. hIc(h~n described the Healthy Start program,
\vhich is based on recommendations from the
President's Commission on Infant Mortality. Nowin its
early stages. Healthy Start is being implemented in 13
communities lvith the aim of reducing infant mortalit)
in those communities by 30 percent.

  Program applicants were required to meet five
basic criteria to have their proposals considered:
( 1) innovation in deliverv svstems (e.g., user friendli-
                    
ness, etc.), (2) community commitment to Health>-
Start's goals, (3) the ability to offer increased access to
health care to reduce low birth weight and other causes
of infant mortality. (4) integration of medical and
social seIT.ices. and (.5) multiagency participation. As a
\vhole, the Healthy Start program is unique in that it
allocates unprecedented resources to prenatal and
perinatal care, mandates community choice and flex-
ibility. and empowers communities to build the kinds
of programs that will work best for them.

  Although Healthy Start funding lasts for only .5 years.
Dr. McCann stressed that a community that has "`bought into"
the program can find a way to keep it in place even after
Fedeml funding is withdrawn. Healthy Start encourages
communi?, involvement and has won support fi-om \zrious
churches, civic k~oups. tribal councils, schools, and business
orgmizatkms. Such agenciesas thePublic Health Senice, the
Health (Zare Financing .\dministration% the Department of
E~luc;~tio~~, ad tlw Department of Health and Human
Sri-\icc\ ;II*` also dcthv pmtm-rs in the national prygmm.


Patricia A. McKee

Now in its third year, the Even Start program is proud of
its cooperatit.e relationships with other agencies and
within the commux~ities it selves. W. WKee presented
a briefoveniew of what Even Start is doing in this area.

  Mrhen Even Start was mandated by (Congress 3 years
ago, part of that mandate required that Even Start work
with other agencies to achieve their common goals. The
76 programs established to date contain a total of 869
collaborative arrangements for prima? (or "core") ser-
\rices and 1,600 collaborative arrangements for support
senices. More than 67 percent of all Even Start programs
work with their local Head Start programs.

Howard T. Miller
Coordinator
Even Start Family Literq Procgrum
Ptinc~ George's Conrn~~ Publir Schools

Mr. Miller opened his presentation \vith a brief o\-eniew
of the statistics on illiteracy in America rued what it costs.
More than 40 percent of all milita? sellice enlistetls are
functionally illiterate. More than nvo-thiI-cls of all L.5;.
colleges must offer remedial English classes. SIore than
one-half of all prison inmates are functionally illiterate.
He stated that these and other data show that the
deleterious effects of illiteracy lead to financial losses,
crime, Liolence, poverty, and depression. Even Start's
approach in Prince George's Comnty is based on t\vo
important assumptions: (1) parents' level of educa-
tional achie\rement affects their children's success in
school and (2) a child raised in a literate home lvill
naturally learn to read,just as he will learn to talk and to
feed himself, through learning "reading behaviors."
The second assumption is called "emergent literacy."

  Mr. Miller stressed the importance of educators'
getting to know the families of the children they teach,
to form a cooperative partnership between the school
and the parent. Parents who are enrolled in the Even
Start program along with their children are able to go
to classwhen it is convenient for them, and transportation
is provided. Parents learn new skills in preparing for the

"If we can help the parent become
literate, these families can succeed."

GED, and they also learn parenting skills that help
them teach their children. General health and nutrition
sen-ices also play an important part in helping families
to learn and grow together; recognizing this importance.
Even Start coordinates closely with Head Start, M?C,
the Cooperative Extension, and schools. "If we can
help the parent become literate, "Mr. lfillersaid, "these
families can succeed."

138 Parents Speak Out for America's Children


a

closing Remark


chapter 7

Antonia C. Novello, M.D., M.P.H.

Su,rgeo,n General

I have onl)- a few comments. I think that toda!, you have
seen that when people get together, things work. But I
can also tell you I am proud of your three capable
I-epresentatives who communicated your wisdom about
what this counts needs and what this administration
can do to sohe our problems. This wz unrehearsed; it
was collectiveI\ put together; and I think it probabl)
represents us better than anyone talking from their own
pain. This is what makes this Conference unique.
Moreover, it's even more difficult for me to speak after
haying heard people like this. I also can tell you that.
when this Conference is done and Ivhen 1t.e all go our
separate ways back to the States and commmnities, rn\
impression will be that we ha\-e come together for onl\-
one purpose, and that's the purpose of taking care of
children and families.

  The President said his vision is that. in the !~ar
2000, this countn' and these children are going to mo~c`
forward. The children of tody will he the explorers.
lvriters, teachers, doctors, and imentors of tomorro\v.
President Bush said that, in America, families come
first, and that's what makes this conference unique.

   You are here from 50 States and from Territories
asfarawayasGuam. You are here from PuertoRico, and
VOLI are here from eveqlvhere. ContraIT to \\hat the
only reporter that has come aboard asked yesterday. yowl
are not all Republicans.  In this Conference, I have
taken great pain to make sure that we are not labeled b!
ethnicity, language, or gender. N'e are here with only
one mission, no matter where we come from and who
we are. That mission is to care for the children and
families of this count?.

  You have articulated what ~0~1 need, and I have
never heard it so well expressed. This Conference is
focused on our children, and we're working tolvard the
benefits of every child. I have been much more im-
pressed than ever by people who perhaps neyer knew

the\. col11d speak for others and be taken seriouslv. M'e
said this is about respect, respect across the board. I
think in these 3 days, we have shared the commonality
that, e\-en if !.oL~ don't speak the same language, it
doesn't mean that you are not intelligent. Most impor-
tantl!., \ve recognize that "poop " is a transient state of
mind: todal. it is ~011; tomorrow, it can be me. So let's
not only be culturallv sensitive, let's also be culturall!
responsive. I think this Conference has concentrated
on that.

  Whatever personal circumstances we brought
here-and I can assure you that some ofyour faces said,
"Show me," and some of your faces said, "One more
conference; don't bother me with trivia"-1 can assure
you that b\. having come here for whatelrer was the
message VOLL thought you \\.anted to bring, you have
adI,anced the field of every child, and you will perhaps
be as responsible for having made one more child part
of these Cnited States byjust having been here. For that
~OLI should be complimented.

  \Ve came here to deal with awareness, transition,
and participation. .-\fter ha\ing listened to the parents,
VOLI realize that parents do all three at once, and some-
times one parent does it all. I hope now that you realize
parents are crucial fol-\vhate\er\~e're going to do in this
countll. for the f:nnnilies. If I.011 don't believe me, then
I \\`ant to know where \-ou'\e been for the last 3 days.

  i\hen I charged !.ou on Monday, I told J.OLI I lt'as
going to ask the best ofyu. But I warn you. I'm going to
ask even more of you, even when you think you're going
to go home and forget about this Conference. I can tell
J-ou that \\-e'\,e heard the parents and the groups. I've felt
the pain, and I've talked to you. I've talked to every one
of 1~1 indi\iduall~ or coltectivelv.  M'hen we leave this
place, we will have everything that's been said included in
a proceedings compendium. We will complete the docu-
ment as quickly as possible, but remember we must go
through the General Services Administration and Gen-
eral Accormting Office to have it printed. We're going to
make sure that this goes to eve? Governor, every one of
you, and el-er) legislatorwho asks for it; right now the Hill
is also clamoring for it. So this is going to be a public
cloculllent for all of those who need it.

140 Parents Speak Out for America's Children


  But the document Lvill bc-just a docttmettt if`ytt
do not work with us to make it a reality. ji)ti \\w-t' able
to see that out- officials at-e committed. but don't evet
put the rights and the benefits of !uur famil!, only- on
some other people's shoulders. You have IO sl1at-e the
t-esponsihility: otherwise, it will not become a rtAit\-.
The reforms of this countt?- uill come fixwat-d through
the families; the parents spoke today, and the\ no
longer Irant to be silent partners. They want to he
activists and advocates, and to do that YOU also have to
speak for vowself. Othenvise, w.e't-e ttot going to get
amwhere. I also heard that parents, especiallv f:nthers.
have to be part of e\-et?,thing that NY do. I think. as I'vv
said beforr, we have to find \sax-s hv \\,hich \se bt-in<g
                         
fathers into the family., not wa!x b!,which 1l.e krep them
away. I know that parents have to he respected as
experts, and it is imperative that we do that.

  ;\nother big area is the. need for flexible hours,
and in itiitiiitiiiratioti, ~`e have dixovct-ed that rrprat-
edh.. Hours front X:30 [a.m.] to 3:OO [p.m.] is ;I bwttti-
fit1 protocol, hut 67 pi-cent of tlic pat c'tltsw)ik ii1 ;i jol,

they cannot atfht-d to leave for 1 hour and vaccinate a
kid. and 21 percent of this cotmtr)`s families are headed
b~.a single parent. Open the clinicwhen the parents can
come, if you realI!. are serious about immunizing. For
once, "Put ytt- tnone>' \vhere your mouth is."

  $Z'e must make sure that we write in the language
that proplc understand. Yesterday, I ~YBS in a transplan-
tation meeting, and the\- told me 1 need bilingual
pet-mits todonate m\.ot-gatts..&ld thel-salminoritiesdo
                             
not donate. \Vould you donate your organs b>. signing
a docttttirtit gi\wt to ~wii hv a pet-son who is not culttir-
                
all\- settGtivc. itt ;I lanp~age that \Y)U do not understand?
1fu~1 sign. I hi117 a bridge I want to talk to x'oit about.
This I~c~partntcnt is making sure that evet?thing is put
itt the latlgu;igc that people \\A1 understand. hlost
itttportantl\.. some of our groups have no tnore than an
8th grads education. So again YOU said it, "Put it in
wxds that people understand." In medicine, we't-e
ah\~~i~~s talkittg about EKG [electrocardiogram] and EEG
[el~ctroencepl~~tlogr~~t~~] . and I asked a doctor, "Mhat is
an EC;<;?" He didn't ktto~v, so I told him, "an egg."

  It's aIs;0 important to remember that the cottntt~
is ft~ll of' childt-rtt ha\.ing children. Lye have to wort-~
about them. too. The] do not love their children less
because the\ arc children themselves. The), at-e going
to tteed m~d~t~~tattdittg. and they are going to need us
to help them, too.

   Self-esteem \vas another issue raised here. Self-
estt'em is no longer just for the child. It also has to come
from the parents, and that is something that we cannot
by.. ;2Iedicare. Medicaid, not-Social Security can bu!,it.
That has to come from within. But \ve cannot only think
of self-rsteem for the children. 14-e have to give it for the
parents. Occasionalh., tak;t. vow time to tell us \vhen Eve
d<) good, and. occasionally-.just forget that xve did bad.
1 think positive is part of \vhere \\`e have to go.

  One \I-omati said wr have to help people to help
themsrlves. rather than offer programs that foster de-
pendrnc~~. I ~gwe. I h;nx~ the feeling that that should
be au+ \ve should mo\~ to1vat.d our goal. LZ'e might use
diffewttt \\oi-d\. \Ve might sa\ "ad\ ocac~" or "enipowcr-
mc3it." Eithczt- \~a!, \vv tit4 ;I little more positi\istii itt
;gcittittg togvthct-.


  The title of the Conference has been "Healthy
Children Ready to Learn: The Critical Role ofparents."
I do believe-and I hope you do, too-that this
Conference has done one thing beautifully: It has
vindicated the parents. It has helped people realize
that they can no longer be silent. No single program in
this country should be done in the absence of the
parents' participation; otherwise, it will be one more
useless piece of paper.

  I said in my opening remarks that this Conference
was the result of 18 months of planning. I believe that
is totally obsolete at the end of these 3 days. This is just
the beginning, not the end of 18 months. I have seen all
my Assistant Secretaries involved in this with me, and
we're going to make sure that whatever we plan will be
with families, parents, and children in mind. For that
reason, this is a success story.

  I know I told you not to ever get discouraged with
the Federal Government. It's a powerful one, and you
have to learn how to use it as a tool. Today you had
everyone at the top discussing how they see it. As I told
you, perception versus reality is the problem here. You
might perceive one thing, and the reality might not be
so bad, but I think it worked on both sides of the table.
You have heard from all of us-from the Secretary
of Health and Human Services, the Secretary of

Agriculture, the Secretary of Education, six Assistant
Secretaries, and the President of the United States. But
most importantly, we heard from you. That's what
makes this Conference unique. I think we should never
underestimate the power of a coalition. Alone, we are
not going to do anything, including the President
himself. We all have to be able to tell the Government
we're here. We're part of the solution. Please, let's not
be part of the problem. I want all of us to get together,
regardless of what we felt when we came here, because
united we can do a lot ofwork. I know that you probably
have thought, "She's going to repeat herself again." No
one alone can work. We have to unite.

  But I also told you to use anger if necessary. I can
tell you that I feel good that you did, because when you
used anger, you were collectively expressing something
that I hope the Conference has alleviated. Perhaps now
you at least know a place where you can find a solution
for your problem. I know that I have told you that we
have to be creative. Part of this world is discourage-
ment, but I'm not going to let anyone use it to take care
of you or me. Discouragement is a state of mind.
  I ask you to join me to share the responsibility for

making your family and your children well. Share with
us at the local and at the State and at the National levels
and in the public and the private sectors. It's no longer
one person's responsibility. There is too much at stake!

  So look at everything that works, and look at
everything you think needs to be replaced. Then call
and cajole and make sure that you get involved. I know
that we are "conferenced out," but I know also that we
are accelerated to the "max." You have to use that
momentum when you get back to work and to your
communities and say, `You know when the Surgeon
General, the Secretaries, and the President speak, they
are committed to make the family top priority." Let's
get real. Let's get real! I can tell you that when the
experts go home, they are not going to be devoid of
work because I am not going to be devoid of work. I
have your telephone numbers, your fax numbers, and
even your grandfather's numbers. So, rest assured that
this is not just the ending of 3 days, but it's the begin-
ning of a coalition of parents taken seriously, trying to

142 Parents Speak Out for America's Children


determine, through their collective actions, what
this government can do for you. I'm with you. Are
you with me?

  I want to bring six people to the podium because
without them I don't think we could have done this.
They are the three parents' representatives and the
three parents' alternates. I think we should give an
applause to our panel. We had six parents, three to
come forward and three to be available in case they
fainted. Obviously, we didn't need the other three, but
they were there and ready to go. So, I would like to do
something. There's not much I can do for you all, but
I can certainly give what I call the Surgeon General's
Certificate of Appreciation, and believe me, I do not
give that too freely. But, when people give of them-
selves, as they did to represent you, I think a Certificate
ofAppreciation from me isjust the first step. I think that
you should be able to thank these six people who
represented you so well. Because without them, and
you, this Conference would have never happened. So
how about if we applaud for all of us. Ellie Valdez-
Honeyman, Larry Bell-I am eating squash all my life-
Sandy Slavet, Rosa Palacious, and Jesus Sada. Sherlita
[Reeves] had to go and pick up her little child, so we'll
keep Sherlita's and mail it to her.

  We might be "conferenced out," but I think we are
motivated to go out there and do a lot for what we have
tried to accomplish. Most important, is that, collec-
tively, we will be able to do it. This document will not
stay on anybody's shelves; I guarantee you that. So
today's the beginning, but I need you. Remember,
united we will succeed.  Separated, we will not get
anywhere. Today's the first day. Thank you for coming,
and God bless you.

le program in this c

Report of the Surgeon General's Conference  143


8 Conference
v Participants
CD


The Surgeon General's
Conference

The Critical Role of
Parents

Washington, DC
February g-12,1992

`To potect their privacy, addresses of
the State Parent Delegates have been
omitted. However, the parents had
the opportunity to exchange addresses
and phone numbers at the
Conference.

2Attended the Native Amerkan
Parent Wmk Group.

3Atte-nded the Migrant Parent
worh Group.

A-2 Parents Speak Out for America's Children

Alabama

Susan Colburn
Montgomery
Letitia Hendricks
Montgomery

Susan Watt
Childersburg

Alaska
Esther Johnson*
Augoou
Danielle Mad&an
Elmendorf

Sue Wilken
Fairbanks

American Samoa

Karen Ho Ching
Pago Pago
Iutita Savali
Pago Pago
Fa+etai Seumany
Pago Pago
Lui Tuitele
Pago Pago

Arizona

Pamela Jones
Phoenix

Ernest0 Meza
Phoenix

Pamela Morrison
Phoenix

Jerry Pearson
Phoenix

Arkansas

Pamela Ashcraft
Little Rock
Mary Blanchard
Blytheville
Deborah Frazier
Little Rock
Barbara Gilkey
Little Rock
Angela Lee
Little Rock

Nancy Lovette
Blevins

Hazel Murray
Pocahontas

Mary Ann Pickard
Searcy
Sherlita Reeves
Paragould
Linda Spence
Blytheville
Dinah Wells
Manila

California

Anna Cortez
Norwalk

Ann Kinkor
Ranch0 Palos Verdes

Colorado

Diane Reeves
Denver

Ellie Valdez-Honeymau
Arvado

Connecticut

Judy O'Leary
Trumbull


State Parent Delegates

Delaware

Laurence Bell
Laurel

Laura Ivansons
Newark

District of Columbia

Goldie Anthony-Henry
Washington

Dona Brawner
Washington
Brenda Calloway
Washington
Joan Christopher
Washington
Rosalind Coleman
Washington
Connie Dudley
Washington
Cristina Espinel
Washington
Lisa Holland
Washington
Susie Ring
Washington
Tawana Kinney
Washington

Maria Meehan
Washington

Kurt Stand
Washington
Lorraine Street
Washington

Florida

Kenneth Chambers
Tallahassee

Romero Cisneros3
Wauchula
Shirley Herbert Kendall
Lauderdale Lakes
Georgia Pappas
Jarpon Spring

Wendell Rollason3
Immokalee
Jesus Sadas
Ruskin

Lisa Spikes
Tallahassee

Anuette Townsend
Tallahassee

Felix Valle3
Immokalee

Connie Wells3
Wauchula
Verdule Youyoutes
Zolfo Springs

Georgia

Anne Butts
Atlanta

Tma Doucett
Columbus

Louise Harris
Clarkesville

Porter Harris
Clarkesville

Gen Hunter
Atlanta

Glenda Welch
Gainesville

Sarita Welch
Clayton

Guam

Mae Ada
Agatia
Margaret Artero
Agatia

Hawaii

Susan Rocco
Aiea

Lanette Teixeira
Honolulu

Helen Usuvale
Honolulu

Idaho

Marcia Hallett
Boise
Carolyn Ropke
Boise

Illinois

Marion Cooper
Chicago
Pat Doherty-Wddner
Chicago
Rosemarie Frey
Wheaton

Mitzi Montgomery
Sauk Village
Catherine Raack
Wheaton

Debra Zurkamer
Springfield

Indiana

Carol Burkes
Martinsville

Mary Snyder
Martinsville

Iowa

Gloria Rlinefelter
Dubuque
Jean Linder
Johnston

Report of the Surgeon General's Conference  A-3


State Parent Delegates

Kansas

Judy Moler
Topeka
Josie Torrez
Topeka

Kentucky
Rhonda Henning
Louisville
Gleason Wheadey
Frankfort

Louisiana

Joan Caloway
Shreveport
Tammy Rodgers
Baton Rouge
Lab Schwartzman
Baton Rouge
Charles Tyler
New Orleans

Maine

Annette Cohen-Hyman
Kennebunkport
Jenifer Van Deusen
Augusta

Mariana Islands

Victoria Mendiola
Tinian

Severina Ogo
Rotas

Rosa Palacious-Power
Saipan
Rita Sablan
Saipan
Catalino Sanchez
Saipan
Elizabeth Torres-Untalan
Saipan

Maryland
Kathy Cooper
Be1 Air

Mona Freedman
Baltimore

Shawn Fritz
Frederick

Barbara Mallonee
Annapolis
Gordon Mallonee
Annapolis
Valarie Phillips
Baltimore

Massachusetts

Deirdre Ahneida
Amherst

Rosalie Edes
Concord
Sandy Slavet
Randolph

Michigan

Charlotte Boatmon
Quincy
Myra Charleston
Detroit

L. Bryn Fortune
Farmington Hills
Celia Garza
Detroit

Luz Teresa Hemandez
Detroit

Minnesota

David Becker
St. Paul

Roxanna Lee Foster
St. Paul

Mississippi
Patty Appleton
Jackson
Gwendolyn Fortson
Jackson
RobertFortson
Jackson
Patricia Hych
Tupelo

Missouri
AlanKilhgsworth
Springfield
Stephanie Mason
St. Louis

Deborah McDannold
Columbia

Carol Mertensmeyer
Columbia

Ellen Moses
Creve Coeur

Donna Snead
Kansas City

Montana

Lea Bear Cub
Brockton

Ellen Bourgeau
Missoula
Marilyn Femelius
Missoula
Julie Flynn4
Wolf Point
Doreen J. Fowler
Wolf Point

Karen Moses
Helena

Sue Phelan
Helena

A-4 Parents Speak Out for America's Children


State Parent Delegates

Nebraska

Susan Christensen
Omaha
Cyndia Eckhardt
Lincoln

Nevada

Patti Miller
Reno

Robert Miller
Las Vegas

New Hampshire
Carol Barleon
Bow

Brenda Copp
Manchester

New Jersey
Joan Applebaum
West Trenton

James Brown
East Orange
Camelia Leach
Newark

Rhonda Nichols
Newark

Ciro Scalera
Newark

New Mexico
Kathryn Brown*
Taos Pueblo
Shirley Chaves
Espanola
Yvonne Gomez*
Taos Pueblo

Patricia Solomon-Thomas
Lagona

New York

Marvina Heywood
Utica

Bob Shannon
Buffalo

Notih Carolina

Gail Dunton
At-den

Gwendolyn Parker
Chinquapin
Meg Sawicki
Charlotte

North Dakota

Mary Ann Anderson
Bismarck

Nanci Cooley
Grand Forks

Ohio

Sandy Barber
Wauseon

Judy Minatodani
Solon

Peter Somani
Columbus

April Thoms
Reynoldsburg

Oklahoma

Pamela Htmt*
Skiatook

Marcia Lemons
Oklahoma City
Mary Littles
Midwest City

Linda Terrell
Oklahoma City
Susan Webb
Norman

James Wilson
Cushing

Oregon
Paula Bender-Baird
Enterprise
Jean Josephson
Portland

Katherine Weit
Portland

Pennsylvania
Risha Henley-Davis
Harrisburg
Loaiza Manzo
Harrisburg
Frank Meredick
Plymouth
Ralph Warner
East Greenville

Mary Wood
Hadley

Puerto Rico

Sonia Benitez
Cataiio

Maria Burgos
Canovanas

Abigail Muiioz Alverio
Caguas
Rafael Sanabria
Santurce

Ahna Socorro De Leon
Caguas

Rhode Island

Linda Dee Bryan
Providence

William Bryan
West Greenwich

Cindy Flores
Coventry
Patrice Richardson
Barrington
Janet Samos
Warwick

Report of the Surgeon General's Conference  A-5


State Parent Delegates

South Carolina
Betty Baker Davidson
Columbia

Debra Derr
Columbia

South Dakota

Julie Darger
Pierre

Glenda VanderPol
Academy

Tennessee

Michael Allen
Monterey
Sherry Allen
Monterey

Linda Lemons
Memphis
Phyllis Medlin
Cookville

Texas

Holly Craig
Grand Prairie

Darlene Dubicki
Austin

Norma Heredia
Arlington
Priscilla Ring
Georgetown
Leslie La&am
Austin

Candy Sheehan
Coppell
MariaVargas
El Paso

Utah

Brent Briggs
Sandy
Becky Hatfield
West Jordan

Vermont

Cathy Crow
South Burlington
Susan Rump
Thetford Center

Clark Sutton
Middlebury
Megan Sutton
Middlebury
Karen Witkin
Essex Junction

Virgin Islands

Mark Benoit
St. Croix

Verona Charlemagne
St. Thomas

Joyce Lebron
St. Thomas

Patricia Nobbie
St. Croix

Catherine Rogers
St. Croix

MaryAnn Weston-Livisay
St. Thomas

Virginia
Loretta Byrd
Richmond

Peggy Singleton
Oakton

Cherie Takemoto
Alexandria

Marilyn West
Richmond

Washington
Rail ArambuP

Oralia Garza
Wapato
Kathy Johnson
Zillah

Felix Monte8
Sunnyside

West Virginia
LornaAdkhxs
South Charleston

Bob Craig
Farmington
Kathy McCullough
Charleston

Barbara Merrill
Charleston

Jane Vance
South Charleston

Wisconsin

Ody Fiih
Hartland

Patty Peterson
Cashton

Patty Skenandore
De Pere

Wyoming
Des&e Lopez
Rawlins

Carole Palmer
Cheyenne

A-6 Parents Speak Out for America's Children


Carolyn AbduIlah
Center to Prevent Handgun
Violence
Washington, DC

Steve Abrams
U.S. Department of Agriculture
Food and Consumer Services
Washington, DC

Shellie Abramson
U.S. Public Health Service
Washington, DC

Irene Adderley
Washington, DC Public Schools
Washington, DC

Jeanette E. Akhter, M.D.
National Perinatal Association
Bowie, MD

Katrina Alaman-Murray
National Association of Social
Workers
Washington, DC

Lamar Alexander
Secretary of Education
Washington, DC

Robert E. Alexander
U.S. Department of Education
Office of Migrant Education
Washington, DC

Barbara Aliza
Association of Maternal and
Child Health Programs
Washington, DC

Dorothy J. Allbritten
National Association of
Children's Hospitals and
Related Institutions
Alexandria, VA

Myron Alltian, Jr., D.D.S.,
M.P.H.
Boston Department of Health
and Hospitals
Boston, MA

Mary Louise Alving, M.Ed.
Citizens Education Center
Seattle, WA

Rita L. Amadeo, M.D.
Easter Seals
Gwaynabo, PR

Maureen Ambrose
Pennsylvania Department of
Education
Harrisburg, PA

Robert W.Amler, M.D., M.S.
U.S. Public Health Service
Atlanta, GA

Kim J. Amos
National Center for Clinical
Infants Program
Arlington, VA

Polly Arango
Algodones Associates
Algodones, NM

Ann Armstrong-Dailey
Children's Hospice International
Alexandria, VA

Susan Austin
National Association of Federal
Education Program
Administrators
Philadelphia, PA

Corime Axelrod
U.S. Public Health Service
Rockville, .MD

Laura Diaz Baker
Puerto Rico Federal Affairs
Administration
Washington, DC

Wendy Baldwin, Ph.D.
National Institutes of Health
Bethesda, MD

Linda V. Barnett
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Rosemary Ramirez Barbour
U.S. Department of Education
Washington, DC

Sandy Bastone
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Pat Bayer
American School Food Service
Association
Alexandria, VA

Mae Beck
Black Coalition of Concerned
Citizens for Child Care
Dallas, TX

Juliane Becket
University of Iowa
Cedar Rapids, IA

Julie Beckett
Federation for Children with
Special Needs
Boston, MA

Arlene Bennett
National Association for the
Advancement of Colored
People
Legal Defense and Educational
Fund, Inc.
Philadelphia, PA

Report of the Surgeon General's Conference  A-7


General Participants

Vii Berg
U.S. Department of Education
Office of Migrant Education
Washington, DC

Catherine Bertini
Assistant Secretary for Food and
Consumer Services
U.S. Department of Agriculture
Washington, DC

Lea D. Beshii
District of Columbia Commission
of Public Health
Washington, DC

Susan Binder, M.D.
Centers for Disease Control
Atlanta, GA

Patrice Birman
U.S. General Accounting Office
Washington, DC

Kathleen Kirk Bishop, D.S.W.
Vermont Department of Social
Work
Burlington, VT

Lorine P. Bizzell
U.S. Department of Agriculture
Food and Nutrition Service
Atlanta, GA

Tara Blackcoon
Wisconsin Winnebago Health
Authority
Mauston, WI

Vi&i Blackcoon
Wisconsin Winnebago Health
Authority
Mauston, WI

Randall Blackdeer
Wisconsin Winnebago Health
Authority
Mauston, WI

Heather Block
U.S. Department of Agriculture
Child Nutrition Service
Alexandria, VA

Joy E. Blotmt
Georgia Department of
Education
Atlanta, GA

Donna Blum
National Institutes of Health
Bethesda, MD

Stephanie Bordenick
National Institutes of Health
Rockville, MD

Mary Ellen Bradshaw, M.D.
Bureau of School Health Service
Washington, DC

Charlotte Brantley
Texas Department of Human
Services
Austin, TX

George Brenneman
U.S. Public Health Service
Rockville, MD

Patrick Bresette
Center for Public Policy Priorities
Austin, TX

Adrienne Brigmon
Head Start Bureau
Washington, DC

Robin Brocato, M.H.S.
Head Start Bureau
Washington, DC

Leigh Brown
Oklahoma State Department of
Health
Oklahoma City, OK

Linda Brown
Health Care Financing
Administration
Washington, DC

Scott Brown
U.S. Department of Education
Office of Special Education
Programs
Washington, DC

MarshaE. Butler, D.D.S., M.P.H.
Colgate-Palmolive Company
New York, NY

John A. Butterfield
President's Council on Physical
Fitness and Sports
Washington, DC

Ann G. Cagigas, R.N., IBCLC
Guaynabo, PR

Suzanne Camp
Greater Southeast Healthcare
System
Washington, DC

Mary M. Campbell
American Psychological
Association
Washington, DC

Rose Cardinal
Asthma and Allergy Foundation
Washington, DC

Mary Brecht Carpenter, R.N.,
M.P.H.
National Commission to Prevent
Infant Mortality
Washington, DC

Lorraine Carrimon
Wisconsin Winnebago Health
Authority
Mauston, WI

A-6 Parents Speak Out for America's Children


General Participants

Sylvia Carter
Head Start Bureau
College Park, MD

Sandra Carton
Head Start Bureau
Washington, DC

DonnaRae Castillo
National Research Service Award
Training Program
Rockville, MD

Jennifer M. Cernoch, Ph.D.
Santa Rosa Children's Hospital
San Antonio, TX

Gwen D. Chance
Texas Head Start Collaboration
Austin, TX

Barbara E. Chandler, M.O.T.,
O.T.R.
American Occupational Therapy
Association
Rockville, MD

Bruce R. Chelikowsky
Indian Health Service
Rockville, MD

Ann Chen
Nurses Association of the College
of Obstetricians and
Gynecologists
Washington, DC

Deborah Clark
National Immunization
Campaign
Washington, DC

Valencia Clarke
Association for the Care of
Children's Health
Bethesda, MD

Deborah Clendaniel, M.S.
Delaware Maternal and Child
Health Services
Dover, DE

Helen T. Closson
Elliot Health System
Manchester, NH

Beverly Coleman-Miier, M.D.
The BCM Group, Inc.
Washington, DC

Robert J. Collins
Indian Health Service
Rockville, MD

Donna L. Conforti
U.S. Department of Education
Washington, DC

Mary Ann Cooney
Manchester Health Department
Manchester, NH

L4x-i Cooper
Healthy Mothers, Healthy Babies
Washington, DC

Genevive W. Cornelius
U.S. Department of Education
Office of Elementary and
Secondary Education
Washington, DC

i&ma Critz
U.S. Department of Education
Washington, DC

Nancy Cude
Arlington Early Intervention
Coordinating Council
Arlington, VA

Ronald Daly
U.S. Department of Agriculture
Extension Service
Washington, DC

Diane D'Angelo
RMC Research Corporation
Portsmouth, NH

Suzanne Danielson
Department of Health and
Hospitals
Baton Rouge, LA

Margaret (Peg) M. Davis
Governor's Planning Office
Harrisburg, PA

Robert E. Dawson
U.S. Public Health Service
Rockville, MD

Alberta Day
Wisconsin Winnebago Health
Authority
Mauston, WI

Mary Dale DeBore
Bethesda, MD

Chris DeGraw, M.D., M.P.H.
U.S. Department of Health and
Human Services
Office of the Assistant Secretary
of Health
Washington, DC

Debra Delgado
School Based Adolescent Health
Care Program
Washington, DC

Diana Denboba
U.S. Public Health Service
Rockville, MD

Sara Reed DePersio
Oklahoma Department of Health
Oklahoma City, OK

Julie DeSeyn
The Home and School Institute
Washington, DC

Report of the Surgeon General's Conference  A-9


General Participants

Leslie Dunne
Healthy Mothers, Healthy Babies
Washington, DC

Bob Erbetta
U.S. Naval Reserve-Campaign
Drug Free America
Marblehead, MA

Dee Dickehnan
Child Protection Program
Falls Church, VA

Eden Fisher Durbin
Y.M.C.A. of the U.S.A.
Washington, DC

Patricia Divine-Hawkins
Head Start Bureau
Washington, DC

Alyson Escobar
U.S. Department of Agriculture
Hyattsville, MD

Melanie Earl
Santa Rosa Children's Hospital
San Antonio, TX

Clare M. Dome&i
U.S. Department of Health and
Human Services
Washington, DC

Juanita C. Evans, M.S.W.
U.S. Public Health Service
Rockville, MD

Larry Edehnan
The Kennedy Institute
Baltimore, MD

Nancy Evans
Manchester School District
Manchester, NH

Dana M. Dorf
U.S. Department of Agriculture
Food and Nutrition Service
Boston, MA

Maurice J. Elias, Ph.D.
Rutgers University
New Brunswick, NJ

Elizabeth Farquhar, Ph.D.
U.S. Department of Education
Office of the Undersecretary
Washington, DC

Laura Drake
Barbara Bush Foundation for
Family Literacy
New York, NY

Gail Johnston Ellis
Epilepsy Foundation of America
Landover. MD

Herta B. Feely
National SAFE KIDS Campaign
Washington, DC

M. Ann Drum, D.D.S., M.P.H.
Office of the Surgeon General
Washington, DC

AM Ellwood
Minnesota Early Learning Design
Minneapolis, MN

Janice Feld
Legislative Affairs Specialist
Alexandria, VA

Mary Jean Duckett
Health Care Financing
Administration
Baltimore, MD

Martha Emerling
Schwartz Foundation
Mt. Laurel, NJ

Karen S. Fennell
American College of Nurse-
Midwives
Washington, DC

B. Richmond Dudley, Jr.
General Services Administration
Washington, DC

LaRue Emmell
Montgomery County Health
Department
Norristown, PA

Sister Isolina Fen+
Easter Seals
Ponce, PR

John C. Duffy
U.S. Public Health Service
Rockville, MD

Lou Enoff
Social Security Administration
Baltimore, MD

M. J. Fmgland
Office of the Surgeon General
Washington, DC

Janet Dumont
U.S. Public Health Service
Rockville, MD

Willie L. Epps, Ph.D.
St. Clair County Head Start
Program

East St. Louis, IL

Marilyn J. Flood
Child Care Action Campaign
New York, NY

DennisDunn
Growing Child
Lafayette, IN

A-10 Parents Speak Out for America's Children


Tony Fowler
U.S. Department of Education
Washington, DC

Amy Fox
American Academy of Pediatric
Dentistry
Chicago, IL

Harriette Fox
Fox Health Policy Consultants,
Inc.
Washington, DC

Clara L. French
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Amy Friedlander
U.S. General Accounting Office
Washington, DC

Robert G. Froehlke, M.D.
Office of the Surgeon General
Washington, DC

Robin S. Funston
U.S. Department of Health and
Human Services
Offke of the Secretary
Washington, DC

Margaret Garikes
Office of the Surgeon General
Washington, DC

Constance Gamer, R.N.C.,
MAN., Ed.S.
U.S. Department of Education
Office of Special Education
Programs
Washington, DC

Preston J. Garrison
United Way of America
Alexandria, VA

Karen T. Garthright
U.S. Department of Health and
Human Services
Food and Drug Administration
Rockville, MD

Kay Ghahremani
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Frankie Gibson
Head Start Bureau
Washington, DC

Barbara Gleason
America 2000
Washington, DC

Miie Golden
Maryland Department of Health
and Mental Hygiene
Baltimore, MD

Gloria Gonzalez
Office of the Surgeon General
Washington, DC

Nilda M. Gonzalez
Puerto Rico Easter Seals
San Juan, PR

Bill Gould
National Network of Self Help
Clearinghouses
Los Angeles, CA

Linda Graham
Children's Rehabilitation Service
Montgomery, AL

Holly Grason
Association of Maternal and
Child Health Programs
Washington, DC

General Participants

Pamela Greenberg
National Association of Pediatric
Nurses and Practitioners
Washington, DC

Joan Greene
National Association of Pediatric
Nurses and Practitioners
Arnold, MD

Sarah M. Greene
Administration for Children,
Youth and Families
Alexandria, VA

Aido G. Gregory
Puerto Rico Department of
Health
Puerto Rico

Sue Greig, M.S., R.D.
American School Food Service
Association
Manhattan, KS

Jerry Griepentrog
Carson City, NV

Mark Grimes
American Academy of Pediatrics
Elk Grove Village, IL

Lucy Gritzmacher
Candlelighters Childhood
Cancer Foundation
Washington, DC

Virgil Gulker
Love, Inc.
Holland, MI

Lynn F. Gurkhx
Department of Environment,
Health, and Natural Resources
Raleigh, NC

William H.J. Haffner, M.D.
Indian Health Service
Bethesda, MD

Report of the Surgeon General's Conference  A-l 1


General Participants

Cynthia Haileselassie
U.S. Department of Health and
Human Services
Washington, DC

Barbara Halhnan
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Janice Hamilton
JMH Communications
New York, NY

Anne L. Hansen
Michigan Department of
Education
Lansing, Ml

Connie Hansen
Council of Community Services
of Roanoke
Roanoke, VA

Kirsten Hansen, M.Ed.
Georgetown University Child
Development Center
Washington, DC

Robert G. Harmon, M.D.,
M.P.H.
Health Resources and Services
Administration
Rockville, MD

Jackie Harrison, R.N.
Children's Hospital
New Orleans, LA

Max Harrison
American School Food Service
Association
Alexandria, VA

Edith Harvey
U.S. Department of Education
Office of Migrant Education
Washington, DC

William Haskins
National Urban League
New York, NY

Laura Havens
March of Dimes
Washington, DC

Ethel Hawkins
District of Columbia General
Hospital
Washington, DC

BarbaraHeiser, R.N., B.S.N.,
IBCLC
La Leche League International
Franklin Park, IL

Michael H. Henrichs, Ph.D.
Rids Adjusting Through
Support, Inc.
Rochester, NY

0. Marie Henry, R.N.,
DNSC, FAAN
Office of the Surgeon General
Washington, DC

Victoria Hertel
American School Health
Association
Littleton, CO

Catherine A. Hess, MSW
American Public Health
Association
Washington, DC

Laurie Hicherson
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Grant Higginson, M.D., M.P.H.
Office of Health Services
Portland, OR

Donna Hines
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Sandra L. Hofferth, Ph.D.
The Urban Institute
Washington, DC

Patrick F. Hogan
U.S. Department of Education
Office of Migrant Education
Washington, DC

Joan Holloway
Division of Special Populations
Program Development
Rockville, MD

Silvia Holschneider
National Health Education
Consortium
Washington, DC

Jerry K. Hood
U.S. Public Health Service
Rockville, MD

Beverly J. Hoover
American Red Cross
Washington, DC

Wade F. Horn, Ph.D.
Administration for Children,
Youth and Families
Washington, DC

Karen Home
South Carolina Governor's
Office
Columbia, SC

Alice M. Horowitz
National Institutes of Health
Bethesda, MD

Vernon N. Houk, M.D.
Centers for Disease Control
Atlanta, GA

A-12 Parents Speak Out for America's Children


Frances Howard
National Library of Medicine
Rockville, MD

Judy Hudgius
Virginia Department of
Education
Richmond, VA

Louise Hunt, R.N., B.S.N.
U.S. Public Health Service
Rockville, MD

Vince L. Hutchins
U.S. Public Health Service
Rockville, MD

Michael T. Hymn, Ph.D.
University of Wisconsin-
Milwaukee
Milwaukee, WI

Darla ldeus
Center on Budget and Policy
Priority
Washington, DC

Roger Iron Cloud
Head Start Bureau
Washington, DC

Angeles Lopez Isales
Departamento de Education de
Puerto Rico
Hato Rey, PR

Brenda James-Pitt
Montgomery County Health
Department

Norristown, PA

Mary A. Jansen, Ph.D.
U.S. Department of Health and
Human Services
Alcohol, Drug Abuse and Mental
Health Administration
Rockville, MD

David Johnsen
Case Western Reserve University
Cleveland, OH

Beverly H. Johnson
Association for the Care of
Children's Health
Bethesda, MD

Dr. Jerry M. Johnson
U.S. Coast Guard
Washington, DC

Richard H. Johnson, ACSW
Head Start Bureau
Washington, DC

Susan Johnson
Texas - Office of the Governor
Austin, TX

Dennis Jolley
Office of the Surgeon General
Washington, DC

Bertha Jones
U.S. Department of Housing and
Urban Development
Washington, DC

Cami Jones
Texas Education Agency
Austin, TX

Deborah Jones
New Jersey State WIG Program
Trenton, NJ

Linda Jupin
U.S. Department of Agriculture
Food and Nutrition Service
Washington, DC

Marta Kealey
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

General Participants

Woodie Kessel
U.S. Public Health Service
Washington, DC

Arlene Kiely
Association for the Care of
Children's Health
Bethesda, MD

Stephen King
Agency for Health Care Policy
and Research
Rockville, MD

Randy Kingsley
U.S. Department of Education
Washington, DC

Regina L. Kinnard
U.S. Department of Education
Washington, DC

Kllen Kliason Kisker, Ph.D.
Mathematics Policy Research,
Inc.
Princeton, NJ

Nancy Kleckner
Growing Child, Growing Parent
Lafayette, IN

Jean Klinge
U.S. Department of Education
Washington, DC

Jane Kratovil
Council of Chief State School
Officers
Washington, DC

Stephen H. Kreimer
National School Health
Education Coalition
Washington, DC

Mary A. Krickus
American School Food Service
Association
Alexandria, VA

Report of the Surgeon General's Conference  A-13


General Participants

Heidi Kurtz
American Federation of
Teachers
Washington, DC

Harms Kuttner
Office of Policy Development
The White House
Washington, DC

Leslie Lanham
Children's Defense Fund-Texas
Austin, TX

Cheryl LaPointe
U.S. Public Health Service
Rockville, MD

Georgianna Larson
Pathfinder Resources, Inc.
St. Paul, MN

K&ten Larson
U.S. Department of Health and
Human Services
Washington, DC

Dora L. Lasanta
Departamento de Education de
Puerto Rico
Bayamou, PR

Bill Latimer
North Carolina Governor's
Office
Washington, DC

Charles LaVallee
Western Pennsylvania Caring
Foundation, Inc.
Pittsburgh, PA

Donna F. LaVallee
New Visions for Newport County
Newport, RI

Jean E. Lazar
U.S. Public Health Service
Rockville, MD

Rice C. Leach, M.D.
Office of the Surgeon General
Rockville, MD

Brenda Leath
National Health/Education
Consortium
Washington, DC

Meg Leavy
University of Maryland
College Park, MD

Alice Lenihan, R.D.
North Carolina State
Department of Environment,
Health and Natural Resources
Raleigh, NC

Donna Len0
Indian Health Service
Rockville, MD

Susan Lenox Goldman
State of New Jersey
Trenton, NJ

AmlW.Lewin
The National Learning Center
Washington, DC

Helen D. Lilly, Ph.D.
U.S. Department of Agriculture
Food and Nutrition Serivce
Alexandria, VA

Lauren Long
Columbia, MD

Thomas J. Long, Ph.D.
Long and Associates
Bethesda, MD

John T. MacDonald, Ph.D.
U.S. Department of Education
Assistant Secretary of Education
for Elementary and Secondary
Education
Washington, DC

Thomas C. MacMichael
Comprehensive Health
Investment Project (CHIP)
Replication - Total Action
Against Poverty (TAP)
Roanoke, VA

Edward Madigan
Secretary of Agriculture
Washington, DC

Patricia Mail
U.S. Public Health Service
Rockville, MD

Lani Smith Majer
Anne Arundel County Health
Department
Annapolis, MD

Pamela Mangu
Georgetown University
Washington, DC

Howard Manly
Deputy Commissioner of Public
Health
Washington, DC

James Manning
U.S. Department of Education
Washington, DC

Carolyn Marsh
Arkansas Children's Hospital
Little Rock, AR

Judy Martiu
East Kentucky Child Care
Coalition
Annville, KY

Jo& Martinez
Puerto Rico Department of
Health
Puerto Rico

A-14 Parents Speak Out for America's Children


Julian Martinez
U.S. Department of Education
Washington DC

James 0. Mason, M.D.
Assistant Secretary for Health
U.S. Department of Health and
Human Services
Washington, DC

Jiiy Mason
Office of the Surgeon General
Washington, DC

Debbie Massey
U.S. Department of Agriculture
Food and Nutrition Service
McLean, VA

Bijoy Mathew
Association of Maternal and
Child Health Programs
Washington, DC

Lisa Matras
Office of the Surgeon General
Washington, DC

William P. Matson
Commonwealth of the
Northern Mariana Islands
Public School System
Saipan, MP

ThurmaMcCaun, M.D., M.P.H.
Office of Healthy Start
Rockville, MD

Mark C. McClary
National Association of WIC
Directors
Washington, DC

Phyllis McClure
National Association for the
Advancement of Colored
People
Legal Defense and Educational
Fund, Inc.
Washington, DC

Beverly McConnell
Michigan Department of Public
Health
Detroit, MI

Pat McCulla
Children's Hospice International
Alexandria, VA

Sandra J. McElhauey, MA.
National Mental Health
Association
Alexandria, VA

Dr. Alice M&ii
U.S. Navy Personal Excellence
Partnership Program
Washington, DC

Mary McGonigel
Association for the Care of
Children's Health
Bethesda, MD

Dennis D. McUbeuny
Charles Webb Easter Seals
Center Parent Association
Mt. Pleasant, SC

Patricia A. McKee, ED
U.S. Department of Education
Office of Elementary and
Secondary Education
Washington, DC

Connie McLendon
Texas Association for the Gifted
and Talented
Round Rock, TX

Elizabeth McMauis
Barbara Bush Foundation for
Family Literacy
Washington, DC

Michelle H. Metts
Cabinet for Human Resources
Frankfort, l?3'

General Participants

Angela D. Mickalide
National SAFE RIDS Campaign
Washington, DC

Elizabeth Milder-Beh
Pennsylvania Governor's Office
Harrisburg, PA

Cbristiue Miller
US. Department of Education
Washington, DC

Howard T. Miller
Glenn Dale Early Childhood
Center
Glendale, MD

Robert C. Miier
Todd County Schools
Mission, SD

June Million
National Association of
Elementary School Principals
Alexandria, VA

Claudette Mitchell, M.BA
U.S. Public Health Service
Rockville, MD

W&e Mitchell
Office of the Surgeon General
Washington, DC

Evelyn Moth
D.O.T. Day Care, Inc.
Washington, DC

William Modzeleski
U.S. Department of Education
Washington, DC

Eileen L. Moe, CSW-ACP
Texas Health Department
Austin, TX

Linda G. Morra
U.S. General Accounting Offtce
Washington, DC

Report of the Surgeon General's Conference  A-15


General Participants

Claudia Morris
Healthy Mothers, Healthy Babies
Washington, DC

Jo& Murioz
National Coalition of Hispanic
Health and Human Services
Organizations
Washington, DC

Martha Naismith
Johnson &Johnson HMI
W'ashington, DC

Carol Naswortby
Texas Work and Family
Clearinghouse
Austin, TX

Pam Navarro
National Institutes of Health
Germantown, MD

Richard P. Nelson, M.D.
Child Health Specialty Clinics
Iowa City, IA

Liz Newhouse
Texas Respite Resource Network
San Antonio, TX

Mary Nichols
Sigma Theta Tau
Clifton, VA

Erik Nielsen
American Occupational Therapy
Association
Rockville, MD

Lulu Mae Nix, J&AD.
National Institute for Integrated
Family Services
Camden, NJ

Julie M. Novak
Alabama Department of Public
Health
Montgomery, AL

Jackie Noyes
American Academy of Pediatrics
Washington, DC

Christine Nye
Health Care Financing
Administration
Baltimore, MD

Diane O'Conor
Governor's Office for Children,
Youth, and Families
Baltimore, MD

Godfrey P. Oakley, Jr., M.D.
Centers for Disease Control
Atlanta, GA

William Oliver
PRIDE Parent Training
Marietta, GA

Sally Olsen
Santa Rosa Children's Hospital
San Antonio, TX

Walter A. Orenstein, M.D.
Centers for Disease Control
Atlanta, GA

Belinda Ortega
Ysleta Del Sur Pueblo
El Paso, TX

JoAnne Owens-Nauslar
Nebraska Department of
Education
Lincoln, NE

Miriam Padilla, M.D.
Rockville, MD

Deborah Parham
Special Initiative, Policy and
Evaluation Branch
Rockville, MD

Barbara Park
American Dental Association
Chicago, IL

Steven Parker, M.D.
Boston City Hospital
Boston, MA

Sandra Parks-Trusz, Ph.D.
Epilepsy Foundation of America
Landover, MD

John Patrick Pa&no
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Lori Pastro
U.S. Department of Health and
Human Services
Washington, DC

Anne L. Pavlich, R.N.
U.S. Consumer Product Safety
Commission
Bethesda, MD

Robym J. Payne
Girl Scouts of the U.S.A.
New York, NY

Gloria Pereira
Frederick County Head Start
Frederick, MD

Steve Perxnison, M.D.
Indian Health Service
Washington, DC

Hihna M. Persson
Woodbridge, VA

Alwin K. Peterson
Michigan Department of
Public Health
Lansing, MI

A-16 Parents Speak Out for America's Children


General Participants

Sharon L. Philip
Alexandria City Health
Department
Alexandria, VA

Patricia Pbipps
Institute for Child Care
Professionals
Houston, TX

Patricia Place
Natural Academy of Sciences
Washington, DC

Deborah Fells Pleasants
Washington DC Public Schools
Washington, DC

Julia Plotnick, R.N.C., M.P.H.
U.S. Public Health Service
Rockville, MD

Michele A. Plutro, Ed.D.
Head Start Bureau
Washington, DC

Betty S. Poehhnan
National School Boards
Association
Alexandria, VA

Susan Poisson, M.A.
Reginald S. Lourie Center for
Infants and Young Children of
Maryland and Virginia
Rockville, MD

Florene Stewart Poyadue
Parents Helping Parents
San Jose, CA

E. Ann Prendergast
U.S. Public Health Service
Rockville, MD

Theressa Price, R.N.
Jackson-Hinds Comprehensive
Health Center
Jackson, MS

Daniel Puntillo, Jr.
Middle Earth
Somerville, NJ

Kathryn F. Purnell
South Carolina Department of
Health and Environmental
Control
Columbia, SC

James F. Quilty, Jr., M.D.
Ohio Department of Health
Columbus, OH

Craig T. Ramey, Ph.D.
University of AIabama-
Birmingham
Birmingham, AL

Arnold D. Ramirez
Phoenix Human Services
Head Start
Phoenix, AZ

MariaRapuano
Alliance To End Childhood Lead
Poisoning
Washington, DC

Karl A. Reis
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Letitia Rennings, M.S.
U.S. Department of Education
Washington, DC

Judith Ressallat
National Association of School
Nurses, Inc.
Washington, DC

Christopher Rigaux
National Center for Education in
Maternal and Child Health
Washington, DC

Suzanne Ripley
National Information Center for
Children and Youth with
Disabilities
McLean, VA

Lourdes A. Rivera
Children's Defense Fund
Washington, DC

Latricia Robertson
U.S. Public Health Service
Rockville, MD

Diana Robinson
Center for Successful Child
Development
Chicago, IL

Cindy Rojas Rodriguez
Southwest Educational
Development Laboratory
Austin, TX

Mark L. Rosenberg, M.D., M.P.P.
Centers for Disease Control
Atlanta, GA

Judith Rosenburg, LCSW
Support Group Training Project
Berkeley, CA

John P. Rossetti
U.S. Public Health Service
Rockville, MD

Paula Russell
Texas Health Department
Austin, TX

Jesus Saavedra, M.D.
U.S. Public Health Service
Washington, DC

Patricia A. Salomon, M.D.,
C.M.O.
U.S. Department of Health and
Human Services
Rockville, MD

Report of the Surgeon General's Conference  A-17


General Participants

Helen Scheirbeck
Head Start Bureau
Washington, DC

Diane Schilder
U.S. General Accounting O&e
Washington, DC

Elizabeth Schmidt
Of&e of the Surgeon General
Washington, DC

George A. Schmidt, Ph.D.
Florida State Interagency Office
of Disability Prevention
Tallahassee, FL

William Sciarillo
Maryland State Health
Department
Baltimore, MD

Mary A. Scoblic, R.N., M.N.
Michigan Department of
Public Health
Lansing, MI

Elaine L. Scott
Capitol Children's Museum
Washington, DC

Maureen Seller
National Center for Education in
Maternal and Child Health
Washington, DC

Fadrienne Sessions
Jackson Hines Comprehensive
Health Center
Jackson, MS

Paula M. Sheahan
National Center for Education in
Maternal and Child Health
Washington, DC

Steven P. Shelov, M.D.
Albert Einstein College of
Medicine
Bronx, NY

Joy Shelton
Delta College
University Center, MI

Bill Shepardson
Council of Chief State School
Officers
Washington, DC

Phyllis J. Siderits
Institute for Child Health Policy
Gainesville, FL

Tom Slatton, Ph.D.
Texas Department of Human
Resources
Amarillo, TX

Elizabeth Sloan
Elliot Health Systems/Elliot
Hospital
Manchester, NH

Allen N. Smith
Head Start Bureau
Washington, DC

Becky J. Smith, Ph.D.
Association for the Advancement
of Health Education
Reston, VA

Marnie Smith
Peyser Associates
Washington, DC

Joanne Smogor
Manchester School District
Manchester, NH

John A. Snowden
Capitol Children's Museum
Washington, DC

Carolyn Snyder
U.S. Department of Education
Washington, DC

ShenieSocha
Governor's Development
Disability Council
Omaha, NE

Denise Sofka
U.S. Public Health Service
Rockville, MD

Marian Sokol, Ph.D
The Children's Hospital
Ambulatory Care Center
San Antonio, TX

Benita Somerfield
Barbara Bush Foundation for
Family Literacy
New York, NY

Lydia Soto-Torres, M.D., M.P.H.
Office of the Surgeon General
Washington, DC

Georgeline Sparks
Indian Health Service
Rockville, MD

Lynn Spector
U.S. Public Health Service
Rockville, MD

Leslie Stablein
Arlington County Department of
Human Services
Arlington, VA

Irene Steibii
Maryland Department of Human
Resources
Baltimore, MD

Walter Steidle, Ph.D.
U.S. Department of Education
Washington, DC

A-18 Parents Speak Out for America's Children


General Participants

Lisa M. Tate
American Academy of Pediatrics
Washington, DC

John Steindorf
Wisconsin Winnebago Health
Authority
Mauston, WI

Elizabeth Tuckermanty
U.S. Department of Agriculture
Nutrition Extension Service
Washington, DC

Stephen B. Thacker, M.D., M.Sc.
Centers for Disease Control
Atlanta, GA

Delores Stewart
U.S. Department of Agriculture
Food and Nutrition Service
Trenton, NJ

Leticia Ubinas, M.D.
U.S. Public Health Service
Alexandria, VA

Carolyn Thiel
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Jenifer Van Deusen
Maine Department of Education
Augusta, ME

Dianne Stewart
Center for Public Policy Priorities
Austin. TX

Josie Thomas
Association for the Care of
Children's Health
Bethesda, MD

Nancy Van Doren
The Travelers Companies
Foundation
Hartford, CT

Joyce P. Stines
Appalachian State University
Boone, NC

Lucy A. Thompson
District of Columbia General
Hospital
Washington, DC

Kaye Vander Ven
U.S. Public Health Service
Alexandria, VA

Rosalie Streett
Parent Action
Baltimore, MD

Ann P. Streissguth, Ph.D.
University of Washington School
of Medicine
Seattle, WA

Karen VanIandeghem
National School Health
Education Coalition
Washington, DC

Claudia Thorne
Greater Southeast Healthcare
System
Washington, DC

Nancy &riffler
Georgetown University Child
Development Center
Washington, DC

Peter K. Vaslow
Institute for the Enhancement of
Family Development
Bethesda, MD

Janet Tognetti
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Dr. Draga Vesselinovitch
University of Chicago
Chicago, IL

Phyllis Stubbs
U.S. Public Health Service
Rockville, MD

Geraldine Tompkins
WIC State Agency
Washington, DC

Candace Sullivan
National Association of State
Boards of Education
Alexandria, VA

Viia View
National Center for Clinical
Infants Program
Arlington, VA

Debra Jean Torrez
Ysleta Del Sur Pueblo
El Paso, TX

Carol Treen
Manchester School District
Manchester, NH

Amin Wahab
Community Development
Institute
Lakewood, CO

Louis Sullivan, M.D.
Secretary of Health and
Human Services
Washington, DC

Lori Tremmel
American Public Health
Association
Washington, DC

Sherlie Svestka
U.S. General Accounting Office
Washington, DC

Report of the Surgeon General's Conference  A-19


General Participants

Elayne Walker
National Association of
Community Health Centers
Washington, DC

Mary C. Wallace
U.S. Department of Health and
Human Services
Food and Drug Administration
Rockville, MD

Janet Wallinder
Multnomah County Health
Department
Portland, OR

Megan Walline
Department of Justice
Washington, DC

Sharon Walsh
Burke, VA

Gailya P. Walter
Centers for Disease Control
Washington, DC

Millie Waterman
National Parent-Teacher
Association
Mentor, OH

Mary Jo Waters
Love, Inc.
Holland, MI

C. J. Wellington, M.D.
Children with Special Health
Care Needs
Washington, DC

Valerie Ahn Welsh
U.S. Public Health Service
Washington, DC

Jerry West
National Center for Educational
statistics
Washington, DC

Beth Wetherbee
Delaware Division of Public
Health
Dover, DE

Debra Whitford
U.S. Department of Agriculture
Food and Nutrition Service
Alexandria, VA

Clarissa Whittenberg
National Institutes of Health
Washington, DC

Steve Wickizer, R.Ph.
Office of the Surgeon General
Washington, DC

I.0l-i wicks
Fox Health Policy Consultants,
Inc.
Washington, DC

Sally Wilberding
National Institute for Dental
Research
Bethesda, MD

Barbara A. Wtier, Ph.D.
National Association for the
Education of Young Children
Washington, DC

A. Kenton Williams, Ed.D.
Head Start Bureau
Washington, DC

J. Terry Williams, R.D., M.P.H.
Wyoming Department of Health
Cheyenne, WY

Kim Williams
Arkansas Children's Hospital
Little Rock, AR

Barbara Wells Willis:
U.S. Department of Agriculture
Washington, DC

Loma Wilson, R.N., M.S.P.H.
Missouri Department of Health
Jefferson City, MO

Modena E.H. Wilson, M.P.H.,
M.D.
Johns Hopkins University
Baltimore, MD

Shirley I. Wilson
Commission on Public Health
Silver Spring, MD

Susan winillgar
U.S. Department of Education
Washington, DC

Mildred M. Winter, M.Ed.
Parents as Teachers National
Center
St. Louis, MO

Bonnie Wise
United Planning Organization
Washington, DC

Frances 0. Witt
Maryland State Department of
Education
Baltimore, MD

KeIIy woods
JMH Communications
New York, NY

Beverly Wright
U.S. Public Health Service
Rockville, MD

Sharon E. Yandian
Head Start Bureau
Washington, DC

Dorothy M. Yonemitsu
San Diego Imperial
Developmental Services, Inc.
and the Union of Pan Asian
Communities
San Diego, CA

A-20 Parents Speak Out for America's Children


General Participants

Lenore Zedosky
West Virginia Department of
Education
Charleston, WV

Edward Zigler, Ph.D.
Yale University
New Haven, CT

Report of the Surgeon General's Conference  A-21


Advisory
Group


The Surgeon General's
Conference

am --

The Critical Role of
Parents

Washington, DC
February g-12,1992

William R. Archer III, M.D.
Deputy Assistant Secretary for Population Affairs
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 736E
200 Independence Avenue, SW
Washington, DC 20201

Jane Baird

Deputy Assistant Secretary for Planning and Evaluation
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 410E

200 Independence Avenue, SW
Washington, DC 20201

Daniel Bonner

Deputy Assistant Secretary for Elementary and

Secondary Education
U.S. Department of Education
Room 2181, FOB 6, Mailstop 6100
400 Maryland Avenue, SW
Washington, DC 20202

Richard Chambers
Director, Intergovernmental Affairs Office
Health Care Financing Administration
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 410B
200 Independence Avenue, SW
Washington, DC 20201

Chris DeGraw, M.D., M.P.H.
Coordinator for the Children and Schools Program
Office of Disease Prevention and Health Promotion
U.S. Public Health Service
U.S. Department of Health and Human Services
Switzer Building, Room 2132
330 C Street, SW

Washington, DC 20201

Marilyn H. Gaston, M.D.
Director, Bureau of Health Care Delivery and Assistance
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 7-05
5600 Fishers Lane

Rockville, MD 20857

B-2 Parents Speak Out for America's Children


AlanHinman, M.D., M.P.H.
Director, Center for Prevention Services
Centers for Disease Control
U.S. Public Health Service
U.S. Department of Health and Human Services
1600 Clifton Road, Mail Stop E07
Atlanta, GA 30333

Wade Horn, Ph.D.
Commissioner, Administration for Children, Youth

and Families

Administration for Children and Families
U.S. Department of Health and Human Services
Switzer Building, Room 2026
330 C Street, SW

Washington, DC 20201

Vince L. Hutchins, Ph.D.
Acting Director, Maternal and Child Health Bureau
Health Resources and Services Administration
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 9-03
5600 Fishers Lane

Rockville, MD 20857

Elaine Johnson, Ph.D.
Director, Office for Substance Abuse Prevention
Alcohol, Drug Abuse and Mental Health

  Administration
Rockwall II, Room 9D-10
5600 Fishers Lane
Rockville, MD 20857

Paul Johnson, Ph.D.
Office of Health Planning and Evaluation
Office of the Assistant Secretary for Health
U.S. Public Health Service
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 740G

200 Independence Avenue, SW
Washington, DC 20201

Hanns Kuttner

Associate Director for Health and Social Services
Policy

Old Executive Office Building, Room 219
Washington, DC 20500

John T. MacDonald, Ph.D.
Assistant Secretary for Elementary and Secondary
  Education
U.S. Department of Education
400 Maryland Avenue, SW
Room 2189
Washington, DC 20202

Rae Nelson

Deputy Associite Director for Education and Drug Policy
Old Executive Office Building, Room 218
Washington, DC 20500

Jeffrey Rosenburg

Special Assistant to the Commissioner
Administration on Children, Youth, and Families
Administration for Children and Families
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201

David Rostetter

Coordinator, School Readiness Initiative
Office of the Assistant Secretary for Planning and

  Evaluation
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 415F
200 Independence Avenue, SW
Washington, DC 20201

Stephen J. Sepe, Ph.D., M.P.H.
National Vaccine Program Coordinator
Division of Immunization
National Center for Prevention Services
Centers for Disease Control
U.S. Department of Health and Human Services
1600 Clifton Road, Mail Stop E-07
Atlanta, GA 30333

Carolyn Snyder

Confidential Assistant to the Assistant Secretary for

Elementary and Secondary Education
U.S. Department of Education
Room 2181, FOB 6, Mailstop 6100
400 Maryland Avenue, SW
Washington, DC 20202

Report of the Surgeon General's Conference  B-3


W. Craig Vandexwagen, M.D.
Acting Associate Director, Office of Health Programs
Indian Health Service
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 6A-55
5600 Fishers Lane

Rockville, MD 20857

Ronald J. Vogel
Director, Supplemental Food Programs
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 1017
Alexandria, VA 22302

Gailya Walters

Program Officer
Office on Smoking and Health
U.S. Department of Health and Human Services
Switzer Building, Room 1229
330 C Street, SW
Washington, DC 20201

Valerie Ahn Welsh
Office of Health Planning and Evaluation
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 740G

200 Independence Avenue, SW
Washington, DC 20201

Paul Wise, M.D., M.P.H.
Maternal and Child Care Health Expert
Joint Program in Neonatality
221 Longwood Avenue, 5th Floor
Boston, MA 02115

Sumner Yaffe, M.D.
Director, Center for Research for Mothers and

Children

National Institute for Child Health and Human

Development

National Institutes of Health
U.S. Public Health Service
U.S. Department of Health and Human Services
Executive Plaza North, Room 643
9000 Rockville Pike
Bethesda, MD 20892

Office of the Surgeon General
U.S. Public Health Service
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201

M. Ann Drum, D.D.S., M.P.H.
Special Assistant for Program Activities

M.J. Fiigland
Director of Public Affairs

Margaret Garikes
Executive Assistant

Louise Hunt, R.N., B.S.N.
Assistant to the Chief of Staff

Rice C. Leach, M.D.
Chief of Staff

Lisa Matras
Special Assistant

Winnie Mitchell

Policy Coordinator for AIDS and Underage Drinking

Elizabeth Schmidt
Director of Communications

Lydia Soto-Ton-es, M.D., M.P.H.
Policy Coordinator for Women's Health

B-4 Parents Speak Out for America's Children


8 Planning
                           0
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The Surgeon General's
Conference

The Critical Role of
Parents

Washington, DC
February g-12,1992

Robin Brocato, M.H.S.
Health Specialist
Head Start Bureau
U.S. Department of Health and Human Services
P.O. Box 1182
Washington, DC 20513

Chris DeGraw, M.D., M.P.H.
Coordinator of Children and Schools Program
Office of Disease Prevention and Health Promotion
Office of the Assistant Secretary of Health
U.S. Department of Health and Human Services
2132 Switzer Building
330 C Street, SW

Washington, DC 20201

Diana Denboba

Public Health Analyst
Habilitative Services Branch
Maternal and Child Health Bureau
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 18A-18
5600 Fishers Lane
Rockville, MD 20857

M. Ann Drum, D.D.S., M.P.H.
Special Assistant for Program Activities
Office of the Surgeon General
U.S. Public Health Service
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 718E

200 Independence Avenue, SW
Washington, DC 20201

Robert G. Froehlke, M.D.
Special Assistant to the Surgeon General
Office of the Surgeon General
U.S. Public Health Service
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 718E

200 Independence Avenue, SW
Washington, DC 20201

Louise Hunt, R.N., B.S.N.
Assistant to the Chief of Staff
Office of the Surgeon General
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 18-67
5600 Fishers Lane
Rockville, MD 20857

Liuda Jupin
Food Program Specialist
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 540
Alexandria, VA 22302

Marta Kealy
Food Program Specialist
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 540
Alexandria, VA 22302

C-2 Parents Speak Out for America's Children


Miriam A. Kelly, Ph.D.
Project Officer

Center for Medical Effectiveness Research
Agency for Health Care Policy and Research
U.S. Public Health Service
U.S. Department of Health and Human Services
6001 Montrose Road, Suite 704
Rockville, MD 20852

Dushanka V. Kleimnan, D.D.S., M.Sc.D.
Deputy Director
National Institute of Dental Research
National Institutes of Health
U.S. Public Health Service
U.S. Department of Health and Human Services
Building 31, Room 2C39
9000 Rockville Pike
Bethesda, MD 20892

Jean Klinge

Special Assistant to the Director of Compensatory

Education Programs
US. Department of Education
400 Maryland Avenue, SW, Room 2043
Washington, DC 20202

Rice C. Leach, M.D.
Chief of Staff

Office of the Surgeon General
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 18-67
5600 Fishers Lane
Rockville, MD 20857

Patricia Mail

Public Health Analyst
Faculty Development Program
National Institute on Alcohol Abuse and Alcoholism
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 14C-20
5600 Fishers Lane

Rockville, MD 20857

Pamela B. Mangu, MA.
Early Childhood Specialist
National Center for Education and Maternal and

  Child Health
Georgetown University
38th and R Streets, NW
Washington, DC 20057

Lisa Matras
Special Assistant
Offtce of Surgeon General
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 718E
200 Independence Ave., SW
Washington, DC 20201

Julia Plotnick, R.N.C., M.P.H.
Chief Nurse

U.S. Public Health Service
Maternal and Child Health Bureau
U.S. Department of Health and Human Services
Parklawn Building, Room 18A-19
5600 Fishers Lane

Rockville, MD 20857

Carolyn' Snyder
Confidential Assistant to the Assistant Secretary for
Elementary and Secondary Education
U.S. Department of Education
400 Maryland Avenue, SW
FOB 6, Room 2189
Washington, DC 20202

Josie Thomas

Family Networking Coordinator
Association for the Care of Children's Health
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814

Valerie Ahn Welsh
Senior Program Analyst
Office of Health Planning and Evaluation
U.S. Public Health Service
U.S. Department of Health and Human Services
Hubert H. Humphrey Building
Room 740G

200 Independence Avenue, SW
Washington, DC 20201

Report of the Surgeon General's Conference  c-3


Agenda at
`0 aGlance


Agenda at a Glance

2:oo - 530
Registration

(Registration
8:00 - 5:30 each
day of the
Conference)

8:00 - 900 Opening Ceremonies

Joint Senice Color Guard and Singers West
Invocation

Reverend Jeffrey Jerimah
Pastor of Fourth Presbyterian Church
Bethesda, Maqland
Welcome

Dr. Louis W. Sullivan
Secretary of Health and Human Services
Charge to Participants
Dr. Antonia C. Novello
Surgeon General

900 - 930 Break

9:30 - lo:40 Concurrent Panel Sessions

Panel ZA-Healthy Children Ready to Learn:
What Are the Roles of Parents, Educators, Health
Professionals, and the Community?

Panel ZB-Special Issues that Impact Children
and Families: Substance Abuse, HIV, and
Violence

1045 - 1:15
Parent
Work
Groups

lo:45 - 12:w
Concurrent Panel Sessions
Panel IA-Early Childhood Issues
That Affect School Readiness
and Health

Lunch During
Work Group   Panel IB-Helphtg Families Get
      Services: Some New-Approaches

2:00 - 2:30 Keynote Address
George H. Bush
President of the United States of America

r] Everyone m State Parent Delegates I] General Participants

D-2 Parents Speak Out for America's Children


8:30 - 9:00 Keynote Speech
Edward Madigan
Secretay of Apkulture

9:00 - 9: I5 Break

9:15 - 12:15
Parent
Work
Groups

Lunch During
Work Group

12:30 - 3:30
Parent
Work
Groups

3:30 Break

ZOO-3z3O
ZOO-3z30
Concurrent Panel Sessions
Concurrent Panel Sessions
Panel W-Child Cam Two
Panel W-Child Cam Two
Perspectives
Perspectives
Panel 5&-Healthy Start, Head
Panel 5&-Healthy Start, Head
Start, EY~II Start and WIG:
Start, EY~II Start and WIG:
Integrating Health Education and
Integrating Health Education and
Social Swvica Programs
Social Swvica Programs

12~30 - ZOO tunch    I

1

3:30 - 5:30
Exhibits Open

4:oo - 5:oo
Workshops 15-28

300 - 9: IO Speech
Roger B. Porter
Assistant to the President for Economic and
Domestic Policy

9:10 - IO:30 Findings of Parent Work Groups

IO:30 - 1 I:45 Responder Panel       I

1 I:45 - 12:15 Meeting Summary
Dr. Antonia C. Novello
Surgeon General

Monday, February 10 I Tuesday, February 11
          4:oo - 5:oo

We invite the parents to attend an open forum to share
your views on a variety of topics related to raising drug-
free children. A panel of representatives from the
Department of Education and the Department of Health
and Human Services will be present to hear your
comments and answer questions about topics such as:

J What do children from birth to age seven need to know
about drug prevention?

J How does drug use affect the lives of young children?
J How can parents prepare children to lead drug-free lives?
J How can schools and communities help?
J What preschool and early elementary programs include
drug prevention?

J How important are drug education curricula for preschool
and early elementary school children7

Report of the Surgeon General's Conference  D-3


Fad&on
and Recorders


The Surgeon General's
Conference

ptcr 1 -earn --

The Critical Role of
Parents

Washington, DC
February g-12,1992

Robert E. Alexander
Migrant Education
U.S. Department of Education
400 Maryland Avenue, SW
FOB 6, Room 2025
Washington, DC 20202

Robert W. Amler, M.D., MS.
Agency for Toxic Substances and Disease Registry
Centers for Disease Control
U.S. Public Health Service
U.S. Department of Health and Human Services
1600 Clifton Road, NE
Mailstop E31

Atlanta, GA 30333

Sandy Bastone

Office of Analysis and Education
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 214
Alexandria, VA 22302

Viia Berg
Migrant Education
U.S. Department of Education
400 Maryland Avenue, SW
FOB 6, Room 2025
Washington, DC 20202

Sylvia Carter

Head Start, Region 3, Resource Center
University of Maryland
University College
University Boulevard at Aldephi Road
College Park, MD 20742

Larry Edelman

Project Coordinator, The Kennedy Institute
Project Copernicus
Department of Family Support Services
2911 E. Biddle Street
Baltimore, MD 21213

Sam Fii

Walcoff & Associates
635 Slaters Lane, Suite 400
Alexandria, VA 22314

E-2 Parents Speak Out for America's Children


&~y Ghahremani
Supplemental Food Programs Division
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 530
,Uexandria, VA 22302

Frankie Gibson
Head Start Bureau
P.O. Box 1182
Washington, DC 20013

Donna Hines
Supplemental Food Programs Division
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 540
Alexandria, VA 22302

Roger Iron Cloud
Head Start Bureau
P.O. Box 1182
Washington, DC 20013

Arlene Kiely

Association for the Care of Children's Health
National Center for Family-Centered Care
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814

Jean Klinge
U.S. Department of Education
FOB 6, Room 2043
400 Maryland Avenue, SW
Washington, DC 20202

Donna Leno
Indian Health Service
Health Education Section
Parklawn Building, Room 6A-20
Rockville, MD 20857

Andrea Wargo, Ph.D.
U.S. Public Health Service
Hubert H. Humphrey Building
Room 727E
200 Independence Avenue, SW
Washington, DC 20201

Juliane Becket
University of Iowa
4555 Westchester Drive, NE
Cedar Rapids, IA 52402

Heather Block
Child Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 1007
Food Program Specialist
Alexandria, VA 22302

Adrienne Brigmon
Head Start Bureau
P.O. Box 1182
Washington, DC 20013

Sandra Carton
Head Start Bureau
P.O. Box 1182
Washington, DC 20013

Donna Rae Castillo
National Resources and Services Administration
Training Program
Division of Education, Evaluation, and
Demonstration

U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 18A-10
Rockville, MD 20857

Tony Fowler
U.S. Department of Education
FOB 6, Room 2155
Washington, DC 20202

Linda Jupin
Supplemental Food Programs Division
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 540
Alexandria, VA 22302

Report of the Surgeon General's Conference  E-3


Marta Kealey
Supplemental Food Programs Division
Food and Nutrition Service
U.S. Department of Agriculture
3101 Park Center Drive, Room 540
Alexandria, VA 22302

Randy Kingsley
U.S. Department of Education
400 Maryland Avenue, SW
FOB 6, Room 2030
Washington, DC 20202

Patricia D. Mail
National Institute on Alcohol Abuse and Alcoholism
Faculty Development Program
Parklawn Building, Room 14G20
5600 Fishers Lane
Rockville, MD 20857

Mary McGonigel

Associate Director, Association for the Care of

  Children's Health
National Center for Family-Centered Care
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814

Latricia Robertson
U.S. Public Health Service
U.S. Department of Health and Human Services
Parklawn Building, Room 18A-55
5600 Fishers Lane
Rockville, MD 20857

Helen Scheirbeck
Head Start Bureau
P.O. Box 1182
Washington, DC 20013

Susan Wininger
U.S. Department of Education
400 Maryland Avenue, SW
FOB 6, Room 2033
Washington, DC 20202

Sharon E. Yandian
Head Start Bureau
P.O. Box 1182
Washington, DC 20013

E-4 Parents Speak Out for America's Children


Workshops
v
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11


Workshop 1

Eight Fatal Parent Paradigms and What You Can
Do About Them

The Surgeon General's
Conference

The Critical Role of
Parents

Washington, DC
February g-12,1992

Bill Oliver
Executive Director
PRIDE Parent Training

Drugs are not new. However, parents' perspectives no\,
about drugs are new. This workshop explored eig]rt
parental viewpoints that lead to adolescent involvement
with the drug culture and described a model that can bt
used to shift these viewpoints.

Workshop 2

Caring for Your Infant and Young Child, AAP
Publication

Steven P. Shelov, M.D.
Professor and Vice Chairman
Albert Einstein College of Medicine
Montefiore Medical Center

With the AAp's childcare book as an example, this
workshop demonstrated to parents how to use th(
childcare information found in a parent guide to prc )-
mote the health and well-being of their children.

Workshop 3

Department of Education Resource Room

The Education Resource Room allowed Conferenct'
participants to obtain more information on releKmt
programs administered by the U.S. Department of
Education. Printed materials were available, and pt'[`-
gram officers were on hand to explain how each pro-
gram works, how to applyforfunding, and other impor.-
tant information.

F-2 Parents Speak Out for America's Children


Workshop 4

Migrant Education: Integration of Services

Patrick F. Hogan
Education Program Specialist
Office of Migrant Education
U.S. Department of Education

This workshop shared information about the Office of
Migrant Education's coordination efforts among vari-
ous programs and with other identified agencies that
offer services to the Migrant population.

Workshop 5

An Introduction to the Head Start-Public School
Transition Demonstration: The Importance of
Parents

Michele Ann Plutro, Ed.D.
Education Specialist
Head Start Bureau

The workshop briefly outlined the Head Start transition
demonstration and the key components required for its
implementation in 1992,1993, and 1994. The involve-
mentofparentsandfamilieswithin thetransitionproject
was discussed.

Workshop 6

Head Start Initiatives for Parents: The National
Parent and Child Centers' Program and the
Comprehensive Child Development Program

Richard H. Johnson
Chief, Social Services, Parent Involvement, Parent-
  Child Centers' Branch
Head Start Bureau

AUen N. Smith
Special Assistant, Associate Commissioner
Head Start Bureau

This workshop presented two national special demon-
stration programs that are administered by the Head

Start Bureau and focused on providing services to
income-eligible families with children younger than
Head Start age. Both programs emphasize ap.proaches
and strategies that support the role of parents.

Workshop 7

Preventing Injuries to Children: What, Why, and How

Modena E. H. Wilson, M.D., M.P.H.
Associate Professor of Pediatrics
Johns Hopkins University

In this workshop, the most important causes of injury in
early childhood were outlined. High risk groups were
identified, and developmental issues were discussed.
Prevention strategies and their implementation were
presented. Supporting materials were provided.

Workshop 8

Public Health Issues in Child Daycare

Stephen B. Thacker, M.D., M.Sc.
Director
Epidemiology Program Offtce
Centers for Disease Control

This workshop focused on the public health issues
related to children in daycare. Issues included the
prevention of infectious diseases and injuries, the po-
tential benefits of child daycare (especially with regard
to child development), issues regarding children with
special needs, and occupational health issues.

Report of the Surgeon General's Conference  F-3


Workshop 9

Violence in Childhood: Where Does It Come
From and What Can We Do About It?

Mark L. Rosenberg, M.D., M.P.P.
Director, Division of Injury Control
National Center for Environmental Health and Injury

  Control
Centers for Disease Control

This workshop examined the problem of violence in
America and focused on (1) the magnitude of the prob
lem, (2) the impact ofviolence on children, (3) the pub
lit health approach to violence prevention, and
(4) potential interventions and strategies for prevention.

Workshop 10

Immunization Coalitions: Mobilizing
Communities to Increase Access to Care

Deborah Clark
National Field Director
National Immunization Campaign

parents can get involved. Discussions centered on family
issues and ways to help parents empower themselves to
support our country's goal of strong, nurturing families.

Workshop 12

Enhancing Readiness to Learn: Mental Health
and Social Competence in Early Childhood

Sandra J. McElhaney, MA.
Director of Prevention
National Mental Health Association

Maurice J. Elias, Ph.D.
Associate Professor of Psychology
Rutgers University

The National Mental Health Association has long
recognized the role of social competence in enhancing
children'sreadiness to learn and to prepare for their roles
as productive citizens. This workshop reviewed National
MentalHealthAssociationeffortsintbisareaandoutlincd
the best practices in early childhood programs.

This workshop related the experiences of the National
Immunization Campaign that united the efforts of more
than 25 national organizations and 75 community-based
coalitions to demonstrate ways that diverse coalitions can
broaden public access immunization and other primary

Workshop 13

New Information for Parents about Nutrition for
Young Children

care services.

Helen D. Lilly, Ph.D.
Food and Nutrition Service
U.S. Department of Agriculture

Workshop 11
Parent Action: Finally! An Organization for ALL
Parents

This workshop addressed what parents need to kiio\v
about good mealtime experiences for the toddler arid
how to implement the new U.S. Dietary Guidelines ill
the diets of children older than two.

Rosalie Streett, M.S.
Executive Director
Parent Action

This workshop focused on why Parent Action, the only
national membership organization for all parents, was
established, what its goals are, what it does, and how

F-4 Parents Speak Out for America's Children


Workshop 14

Health Care for Children Living in Poverty

Charles P. LaVallee
Executive Director

Western Pennsylvania Caring Foundation, Inc.
Caring Program for Children

The Caring Program for Children provides free pri-
mary health care coverage to children who live in
poverty but are ineligible for Medicaid. The workshop
examined the impact of this innovative public-private
partnership, which is now operational in 15 States. The
Caring Program's new initiative, care coordination for
children with special health care needs, was also pre-
sented. Plans for national replication were highlighted.

Workshop 15

Our Children Are Dying-What Are You Gonna Do?

Beverly Coleman-Miller, M.D.
President
The BCM Group, Inc.

This interactive workshop offered parents and others
ways to control an apparently uncontrollable prob-
lem-violence and its impact on our children. Specific,
proven initiativeswere presented, along with the newest
ideas from the leaders in the field. The roles of the
community and the schools were discussed.

Workshop 16

Improving Access to Care: Peer Support Groups
for Low-Income Pregnant Women and New
Parents

Judith Rosenberg, L.C.S.W.
Director
Support Group Training Project

Both service providers and policymakers now acknowl-
edge the need to address nonmedical social and psycho-
logical barriers that block access to care and preclude

improvement in the health of low-income populations
and promotion of positive health practices. The Sup-
port Group Training Project organizes and facilitates
peer support groups that are an effective way of deliver-
ing health education to low-income and minority preg-
nant women and new mothers.

Workshop 17

Poverty, Illness, and Child Development: A
Pediatrician's Perspective

Steven Parker, M.D.
Director, Developmental Assessment Clinic
Boston City Hospital

This workshop focused on the double jeopardy of
children growing up in poverty: (1) the increased risks
for exposure to medical illnesses, substance abuse, and
family disorganization and (2) the deleterious effects of
these risks on children's ability to learn. Strategies
about how to meet these children's needs were dis-

cussed.

Workshop 18

U.S. Department of Education Resource Room

The Education Resource Room was available for Con-
ference participants to obtain more information on
relevant programs that are administered by the Depart-
ment of Education. Printed materials were available,
and program offtcers were on hand to explain how each
program works, how to apply for funding, and other
important information.

Report of the Surgeon General's Conference  F-5


Workshop 19

Parent/School Partnerships: A Chapter I
Strategy for Improving Student Achievement

Workshop 22

Childhood Lead Poisoning Prevention in the
1990s

Diane D'Angelo
Research Associate
RMC Research Corporation

Chapter I programs have long advocated the involve-
ment of parents in their children's education. This
workshop provided participants with an overview of
Chapter I programs, requirements for parent involve-
ment, strategies to involve parents, and suggestions for
home-based activities parents can use to support their
children's education.

Workshop 20

"As I Am": An Early Childhood Mental Health
Curriculum

Kirsten Hansen, M.Ed.

Director, Head Start Mental Health Project
Georgetown University Child Development Center

Promoting good mental health practices is important
for all children. This workshop introduce,d the con-
cepts of mental health, related methods of incorporat-
ing the curriculum into daily life, and presented lesson
plans.

Workshop 21

Preventable Developmental Disabilities

Godfrey Oakley, M.D.
Division of Birth Defects and Developmental
Disabilities

Centers for Disease Control

This workshop focused on major opportunities to pre-
vent poverty-associated disabilities including mental
retardation, spina bifida, and fetal alcohol syndrome.

Susan Binder, M.D.
Chief, Lead Poisoning Prevention Branch
Centers for Disease Control

This workshop focused on the Centers for Disease
Control statement Preventing Lead Poisoning in Young
Children.  It presented simple ways to reduce lead
exposure, and the shift to primary prevention of lead
poisoning was discussed. The workshop also examined
the roles of the following groups in preventing lead
poisoning: Federal, State, and local agencies; legislative
bodies; advocacy groups; private foundations; and indi-
viduals.

Workshop 23

Bright Smiles, Bright Futures: A Multicultural
Approach to Oral Health Education

Alice M. Horowitz, MA. (Moderator)
National Institute of Dental Research
National Institutes of Health

Marsha E. Butler, D.D.S.
Colgate-Palmolive Company

Robert S. Gold, Dr.P.H., Ph.D.
University of Maryland

Janice M. Hamilton, M.S.
JMH Communications

Through a partnership with national Head Start and
the University of Maryland, Colgate has developed ;*
multicultural oral health education curriculum \\itlr
interactive activities and support materials for PI.<`-
school and first grade children. Its specific aims arc' 1"
(1) improve children's oral health knowledge. (2'
improve children's attitudes toward preventive Old
health care, (3) positively influence children's ol-nl
health behavior, and (4) encourage family invOlvc'-
ment in children's oral health.

F-6 Parents Speak Out for America's Children


Workshop 24
Parents as Teachers: Ensuring Good Beginnings
for Children

Mildred M. Winter, M.Ed.
Executive Director
Parents as Teachers National Center

Thisworkshop centered on parents' role as the first and
most influential teachers of their children and on a
home-school partnership that supports parents of chil-
dren from birth to age three in this role. Results from
evaluations of the program's effectiveness were pre-
sented. Adaptations for teen parents, the childcare
center, the workplace, and other program settings were
described.

Workshop 25

Feeding Hungry Children

Barbara Hallman
Chief, Policy Branch, WIC Division
Food and Nutrition Service
U.S. Department of Agriculture

This workshop provided a description of the range and
scope of food assistance programs available to Ameri-
cans, with special focus on those serving very young
(preschool) children.

Workshop 26

Tackling Children's Health in an Urban Center:
One Corporation's Model Initiative

Nancy Van Doren
President
The Travelers Companies Foundation

This workshop detailed the involvement of The Travel-
ers in community-wide efforts to improve children's
health in Hartford, Connecticut. The model focuses on

collaboration and coordination ofcommunityresources
and services. This model may be replicable in other
communities.

Workshop 27

National SAFE KIDS Campaign-Preventing the
Number One Killer of Kids: Childhood Injury

Herta B. Feely, B.A.
Executive Director
National SAFE KIDS Campaign

Childhood injury is the leading threat to the health of
America's children. The National SAFE KIDS Cam-
paign illustrates how community-based childhood in-
jury prevention activities (in the areas of traffic injury,
burns, falls, poisonings, chokings, and drownings) can
be effective in reducing this threat. The workshop
informed participants about the Campaign's resources
and how to become involved in local SAFE KIDS initia-
tives such as Project GET ALARMED, SAFE KIDS
BUCKLE UP, and the SAFE KIDS Bicycle Helmet
Campaign.

Workshop 28

Capacity Building Through Early Intervention

Connie Gamer, RNC, MSN, Ed.S.
Senior Program and Policy Specialist
Office of Special Education Programs
U.S. Department of Education

This workshop examined strategies for capacity-building
for families with children with disabilities using the
Part H conceptual framework. Links between health
and education served as a fundamental building block
of this discussion.

Report of the Surgeon General's Conference  F-7



The Surgeon General's
Conference

1 -earn- --

The Critical Role of
Parents

Washington, DC
February g-12,1992

Alliance To End Childhood Lead Poisoning
600 Pennsylvania Avenue, SE
Suite 100
Washington, DC 20003

America 2000
400 Maryland Avenue, SW
FOB 6
Washington, DC 20202

American Academy of Pediatric Dentistry
211 East Chicago Avenue, #lo36
Chicago, IL 60611

American Academy of Pediatrics
141 Northwest Point Blvd.
P.O. Box 927
Elk Grove Village, IL 60009-0927

American Dental Association
211 E. Chicago Avenue
Chicago, IL 6061 l-2678

American Red Cross
431 18th Street
Washington, DC 20006

American School Food Service Association
1600 Duke Street, 7th Floor
Alexandria, VA 22314

Arkansas Department of Health
4815 West Markham Street
Slot 17
Little Rock, AR 72205-3867

Association for the Care of Children's Health
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814

Barbara Bush Foundation for Family Literacy
c/o Simon Schuster
15 Columbus Circle, 34th Floor
New York, NY 10023

Centers for Disease Control
1500 Clifton Road
Atlanta, GA 30333

Cbild Care Action Campaign
330 7th Avenue, 17th Floor
New York, NY 10001

G-2 Parents Speak Out for America's Children


Children's Hospice International
901 North Washington Street, #700
Alexandria, VA 22314

Department of Agriculture
Supplemental Food Programs Division
3101 Park Center Drive, Room 540
Alexandria, VA 22302

Elliot Health Systems/Elliot Hospital
80 Tarrytown Road
Manchester, NH 03103

Florida HRS State Health Office
1317 Winewood Boulevard
Tallahassee, FL 32399-0700

Health Care Financing Admiitration
200 Independence Avenue, SW
Washington, DC 20201

JMH Communications
c/o Colgate-Palmolive Company
300 Park Avenue
New York, NY 10011

Kids Adjusting Through Support, Inc.
600 East Avenue
Rochester, NY 14607

Maryland Department of Health and Mental Hygiene
201 W. Preston Street
Baltimore, MD 21201

MELD (formerly Minnesota Early Learning Design)
123 North Third Street Suite 507
Minneapolis, MN 55401

National Information Center for Children and Youth
  with Disabilities

7926 Jones Branch Drive, Suite 1100
McLean. VA 22102

National Association of Community Health Centers, Inc.
1330 New Hampshire Avenue, NW
Washington, DC 20036

National Association of Elementary School Principals
1615 Duke Street

Alexandria, VA 22314

National Association of WIG Directors
P.O. Box 53405

Washington, DC 20009-3405

National Center for Clinical Infants Program
2000 14th Street, North
Suite 380

Arlington, VA 22201-2500

Report of the Surgeon General's Conference  G-3


National Center for Education in Maternal

  & Child Health
38th 8c R Streets, NW
Washington, DC 20057

National Head Start Association
201 N. Union Street, Suite 320
Alexandria, VA 22314

National Health Education Consortium
Switzer Building, Room 2014
330 C Street, SW
Washington, DC 20201

National Institute for Dental Research
9000 Rockville Pike
Building 31, Room 2C35
Bethesda, MD 20892

National Mental Health Association
1021 Prince Street
Alexandria, VA 223142971

National SAFE RIDS Campaign
111 Michigan Avenue, NW
M'ashington, DC 20010

National Urban League
500 East 62nd Street
New York, NY 10021

Pathfinder Resources, Inc.
2324 University Avenue West
Suite 105
St. Paul, MN 55114

Reginald S. Lourie Center for Infants and Young
Children of Maryland and Virginia
11710 Hunters Lane
Rockville, MD 20852

South Carolina Governor's Office
1205 Pendleton Street
Columbia, SC 29201

State of New Jersey
CN 364
Trenton, NJ 086250364

Texas Office of tbe Governor
Capitol Station
P.O. Box 12428
Austin, TX 78711

Texas Respite Resource Network
Santa Rosa Children's Hospital
P.O. Box 7330
San Antonio, TX 78207-3198

The Home and School Institute
1201 16th Street, NW
Washington, DC 20036

United Way of America
701 N. Fairfax Street
Alexandria, VA 22314

University of Vermont
Department of Social Work
Burlington, VT 05405

U.S. Naval Reserve-Campaign Drug Free America
P.O. Box 44
Marblehead, MA 01945

G-4 Parents Speak Out for America's Children


m Entertainment


The Surgeon General's
Conference

The Critical Role of
Parents

Washington, DC
February g-12,1992

W e extend our thanks to the individuals and groupswho provided
    entertainment during the Conference sessions and breaks. The
    performances reminded us, in many cases, of our country'svaried
cultural heritage. More importantly, the spark and vitality displayed by the
children underscored the importance of the Healthy Children Ready To
Learn Initiative and inspired us to work diligently to achieve our goal. Thank
you to all who entertained and inspired US.

Antonia C. Novello, M.D., M.P.H.
Surgeon General

Arlington County Head Start
Children Singers
Arlington Community Action
Program
Arlington, VA

Cathi Brown, Comedienne
Washington, DC

The Chicitas
Langley Park/McCormick
Elementary School
Hyattsville, MD

The Fabulous Flying Fingers
(c-h-=)
Barnsley Elementary School
Rockville, MD

Glenallan Chorus
Glenallan Elementary School
Silver Spring, MD

Joint Service Color Guard
Washington, DC

Keith Norris, Magician
Bowie, MD

North Springfield Handbell
Ringers
North Springfield Elementary
  School
Springfield, VA

Rapping Cheerleaders
The Amidon School
Washington, DC

Singers West
West Potomac High School
Alexandria, VA

Town 8c Country Singers and
Ringers

The Newport School
Kensington, MD

Young Traditional Indian Singers
  and Dancers
Indian Health Service
Baltimore-Washington Area

Kids on the Block
Columbia, MD

H-2 Parents Speak Out for America's Children


Report of the Surgeon General's Conference H-3