Hospital and Research Center (the chronic care hospital of the University of
Chicago, Department of Pediatrics). Currently, home discharge teams (at
Children's Memorial, Wylers, and Michael Reese) are preparing protocols
to arrange for progressive preparation for discharge of chronic ventilator-
dependent children, either to LaRabida or directly to home or other domi-
ciliary setting now available in the Chicago area. LaRabida is planning to
serve as an intermediate care setting. The capabilities of LaRabida are rap-
idly being enlarged to handle ventilator-dependent patients. It is also antici-
pated that LaRabida Children's Hospital and Research Center will develop
significant programs of research and education around the very complex set
of problems which these children present.

It is clear that the maintenance of such a network is going to require ex-
tensive ability to monitor patient flow and status, to produce and evaluate
educational materials, programs, and protocols, and to bring together
funding guarantors to establish the most effective and comprehensive pay-
ment programs. Thus, the developing consortium, in addition to seeking
consultation for preparing each of the member institutions to provide a uni-
form standard of care and coordination of services, is also seeking assis-
tance from an organization,2 external to the institutional members which
will coordinate personnel, parent, and patient education; act as an informa-
tion clearinghouse; maintain a flow of patient records and appropriate
statistics; and act as the center for the coordination of payment sources.

2&w for Life is a not-for-profit organization providing services of documentation, educa-
tion, and demonstration designed to meel these objectives and others that follow (documenta-
tion center, community-based options for the disabled).

26


THE CHILD AT HOME

Mrs. Bette Wartenberg

My name is Bette Wartenberg. I am Donnie's mother. I am here to pre-
sent the parents' view. I will describe the implications of a child's chronic
illness on the family, the financial issues, and the complex problems en-
countered by my family. In addition I will compare experiences reported by
other parents in our parents' group.

Donnie, my sixth child, was born with defects that involved the left side
of his body including his left lung, which later on had to be removed. At the
time of his birth we were told that Donnie had to undergo immediate sur-
gery because of what is called an omphalocele, which means that his navel
and stomach had evolved outside of his abdomen. Within 4 hours of birth
he was transported from Joliet Hospital to Children's Memorial Hospital in
Chicago, where the first stage of surgery was performed immediately.

For us as parents, the first shock in the delivery room was knowing that
our child had multiple birth defects. We were overpowered by fear of losing
our child. Later, the fear was intensified by observing our child in the ICU,
when his heart stopped 18 times and he had to be resuscitated. Only because
of the prompt response from health care personnel, Donnie survived all this
without brain damage.

During his first 3 years in an acute intensive care unit, Donnie underwent
a total of 20 operations. Most of the time he was breathing with the help of
a machine-a ventilator-receiving numerous intravenous infusions and
treatments while we were watching as helpless by-standers. We often did not
understand what was done, the reason why, and we had no knowledge of
the alternatives.

Our main social contacts were other parents of critically ill children in the
ICU waiting area who, over a period of months, became like close friends to
us. Some were the unlucky ones; their children died. We grieved with them,
always thinking that we could be next. After years of this, we shut ourselves
off and avoided contacts with those parents-even to the point of being
abrupt.

We did not receive professional help to deal with the psychological stress
we were under. My husband dealt with it by talking constantly about it,
while I tried not to think or talk about it, which caused great problems be-
tween us. We lost a lot of our friends. They did not know what to say, so it
was easier for them not to see us. Besides, we were no fun to be with, be-
cause we were constantly talking about our problem.

During his years in the ICU, attempts were made to wean Donnie off the
ventilator. A pediatrician forcefully suggested that we take Donnie home,
that is, to die. We took Donnie home. He had a tracheostomy; that is, a
hole in his trachea. He was breathing poorly by himself; we thought he
would not live much longer. We were not prepared to properly take care of
him at home. We did not even know how to regulate the oxygen flow. He
was home for two months, only to return to the Children's Memorial ICU
because of pneumonia and failure to thrive. By then, we had lived through
two months of a nightmare with no help, no medical caregivers, no
sleep-only worry. We were exhausted and burned out.

27


We shared this experience years later with other parents who at the time
were sent home unprepared, with a child who could not breathe by himself
without a mechanical aid. This couple had ventilated their child by hand 24
hours a day, taking turns day and night for months, until the decision was
made that the child needed a mechanical ventilator at home.
Our home is in Joliet, Illinois, 60 miles from Children's Memorial
Hospital in Chicago. Rather than spending 2 to 4 hours on the road a day,
we chose to move into the waiting rooms at Children's Memorial Hospital,
where we lived for over a year. We slept on the couch, showered in the base-
ment locker rooms, ate hospital food, and paid parking fees. Our 5
children, ranging in age from 17 to 12 years, were left unattended most of
the time. They learned to take care of themselves. After about a year, my
husband and I decided that one of us had to stay at home in Joliet because
our other children were beginning to feel the effects of our absence. I went
to Joliet, returning to the hospital occasionally, and my husband stayed
with Donnie. Consequently, he lost his business and to live we had to bor-
row money from family members. Besides dealing with this stress, there was
no money or time to go on vacations with the other children. We haven't
had a family vacation for 10 years!

Our insurance covered $100,000 of Donnie's care. After a few months,
we were told to apply for financial assistance to Illinois Public Aid and the
Division of Services for Crippled Children. Children's Memorial Hospital
was very helpful in helping us apply. We qualified because Donnie was born
with multiple deformities.                               1
Why is it much easier to get aid if a child is born with defects than if some
illness or accident causes defects at a later date? Others in our parent-group
had children who had problems getting financial help. One parent was
called into the hospital billing department and was presented with an
astronomical hospital bill and was asked "How are you going to pay for
this?" Some parents were advised to go on unemployment, go on public
aid, and even get a divorce.

After spending the better part of 3 % years in an Acute ICU, Donnie was
transferred into an intermediate care unit for his long-term care. Repeated
attempts to wean him from his breathing machine caused him to be
lethargic, puffy, and turn blue. He ceased to grow. The only time he was
well was when he was on his ventilator. Then he became a very active,
happy child. His many arrests had apparently not damaged his brain. He
had become a very precocious child, even inventing his own sign language!

Even though we were at his bedside as much as possible, many of the
functions of a parent were taken over by nurses and other health caretakers.
Correcting bad behavior or eating habits is hard to accomplish outside of a
family setting.

Since Donnie was confined to this unit by being on the ventilator, he
lacked opportunity for an education appropriate for a 4 year old. At this
time he got i/2 hour of tutoring a day. Children's Memorial Hospital, being
an acute care hospital, was unable to provide additional education for a
chronically disabled child.

Then in 1978 a new idea was presented to us by a new staff physician.
Give Donnie optimal ventilation so he can grow. Prepare him to go home
safely with his ventilator. With our memories of the past experience, the

28


idea horrified us. But after meeting with qualified medical personnel, we
were assured that we would be trained and would have medical help to sup-
port us. Donnie needed to go home in order not to become socially handi-
capped. Once while I was talking to him on the phone, I told him I was sit-
ting at the kitchen table. After he hung up, he asked his nurse "What is a
kitchen table?" My other children were delighted when we told them that
Donnie could come home, and they were anxiously awaiting his arrival.

In 1978 no money was allocated by Federal or State law to care for
ventilator-dependent children at home. The State knew how to pay the high
costs of intensive care but had no experience in providing funding for less
expensive care at home. A long period of negotiation took place. The State
officials finally found the solution to pay 100% for 2/3 less expensive
medical care at home. We were luckier than others in the parents' group
who were faced with the spend-down money (money to be paid according to
income by the family to the State).

Some parents in our group had private insurance. The insurance com-
pany refused to change their reimbursement policy for home care. The in-
surance company was willing to pay everything in hospital, but refused pay-
ment for home care. As a result, the insurance company rapidly spent the
$500,000 in the hospital. This money could have lasted for years at home.
They had no incentive to change. Therefore, public funds were needed
sooner, because the private insurance money was gone so quickly while the
patient remained in the ICU. So the burden was tranferred to the State and
ultimately to the taxpayer.

Transition

It took nine months from the time the decision was made to send Donnie
home before it really happened. During that time we built a specially
adapted addition to our house. Regular meetings with the health care team
were held. These meetings clearly defined goals acceptable to all, and pro-
vided clear objectives and specific plans for action. Each team member had
accountability. The home discharge team included the dedicated clinical
staff who had cared for Donnie over the years. The coordinator was his
nurse; the educator was his respiratory therapist. Both were caregivers who
had received him in the ICU shortly after his birth. The team also involved
physical and child-life therapists, special service staff, social workers, etc.
Initially, several members had to overcome their own fear and negative
thinking, but the more educated they became, the more they were able to
overcome this barrier.

My husband and I were trained to handle Donnie's ventilator equipment
by both classroom teaching and "hands-on" experience. We passed a test
and were certified. Nurses we recruited, selected, and hired to provide
24-hour home care were trained with us at the hospital, in the classroom,
and at the bedside. Community support services, including a primary physi-
cian and emergency room staff in Joliet, were well-informed about their
responsibility prior to their consent. Nursing, physical therapy, and
respiratory therapy plans and exact procedures were clearly written, and
local suppliers of medical equipment were found, motivated, and well-

29


prepared. Funding was finally approved because of highly motivated and
responsible actions of the leaders and staff of the Division of Services for
Crippled Children, the Illinois Department of Public Health and SSI
Disabled Children's Program.

The team work of all these individuals made the home program a reality.

Home

On September 10, 1979, our son came home to stay. It has been a difficult
task. We are dealing with a lack of privacy, the ventilator breaking down,
lack of service for equipment, and difficulties in getting medical supplies.

However, the benefits of having Donnie at home far outweigh the
difficulties.

We are now a normal family, maybe different in some ways, but we are
all together, sharing all the experiences of life. We no longer divide our time
among our children. Donnie's health has improved; he has grown several
inches. His oxygen need has decreased. His social life is no longer limited to
the ICU where he never knew the difference between day and night. He is
now getting an education, doing average-to-above-average work. He no
longer has to regard cardiac arrests in the bed next to him as his only occa-
sion for "social-get-together." Instead he goes to weddings; he was a ring
bearer at his brother's wedding where he never missed a dance. Donnie is a
joy to be with. He loves his religion. He celebrated his Holy Communion
last month. He tolerates being off the ventilator with oxygen longer. He
races his race car (recently he placed first in competition), climbs trees, and
he even fell and broke his arm at a birthday party. Donnie worries right now
whether he will get married one day. He is concerned that it is not much fun
to go trick or treating, because no matter how he dresses up, everybody
recognizes him by his tracheostomy. His nightly prayer includes: "Dear
God, if you are listening, please get rid of my trach so I can play football."

We know we can go back to Children's Memorial Hospital any time we
have any problems with Donnie. He will be well taken care of by loving
people who know him and care for him and us.
We are deeply grateful to the staff of Children's Memorial Hospital.
They never gave up hope. And thank God nobody pulled the plug in the
ICU. Thank you.

30


WORK GROUP RECOMMENDATIONS

INTRODUCTION TO WORK GROUPS

When The Voices of Children Are Heard On The Green
    And Laughter Is Heard On The Hill,
   My Heart Is At Rest Within My Breast
      And Everything Else Is Still.

William Blake

All of those participating in the Workshop have made a commitment to
improving the quality of life for children with handicapping conditions and
their families. In sharing this common goal, they shared a common strug-
gle-a struggle that is bounded by our limits in knowledge, technology, and
resources. It is a struggle that taps boundless human compassion and tests
every bit of creativity. The task of the work groups was to challenge each
limit and to invoke all of our talents to solve the urgent problem of extend-
ing humanistic and comprehensive care to all handicapped children and
their families.

They were a diverse group with a diverse perspective: parents, profes-
sionals from many disciplines, public and private service providers,
financers, and policymakers. The interaction of their combined perspectives
has the potential for generating unique strategies and solutions that can
serve to shape a nationwide effort. As a case example, the ventilator-
dependent children provide a rich opportunity to go forward with in-
novative strategies that can affect all handicapped children and their
families.

For a day and a half, ten working groups examined two key areas of con-
cern: organizational and financial considerations. In each area a broad
range of issues was addressed by the groups. Organizational considerations
included the scope of approach to delivery of essential services, institutional
roles and limitations, and public and private organizational roles and
limitations. The groups examined the means of overcoming deterrents to
care in the community, of promoting family autonomy, of setting standards
for quality assurance, and of defining educational and research needs.

Financial considerations included approaches to reimbursement for
ventilator-dependent children, reimbursement for community-based care
and for tertiary and intermediate institutional care, cash-flow dynamics,
multiple sources of funding for comprehensive care, and research in financ-
ing services.

Each group also examined existing processes and mechanisms-their ad-
vantages and limitations, the deterrents to improvement, and strategies for
the evolution of family and community management of care for these
children.

The groups presented their recommendations to Drs. MacQueen and Ket-
trick who synthesized these and identified common themes to present to the
Surgeon General at the close of this Workshop.

31


RECOMMENDATIONS

The participants in the workshops were assigned to ten working groups of
approximately fifteen persons each. Each group was assigned specific, re-
lated sets of issues to examine in depth. The groups were to define existing
processes and mechanisms, their advantages and limitations, and the deter-
rents to improvement. They were also asked to develop strategies for the
evolution of family and community management of the care of ventilator-
dependent children.

The work groups looked at what was working in the system, defined
numerous needs and problems and deterrents, and suggested strategies for
improvement. The diversity of perspectives, the flow of ideas, and various
tangents of the interactions present in the work groups cannot be covered
adequately in this document, but some of the more pressing programs,
needs, and strategies are distilled and categorized here. For the purpose of
providing a framework for presentation, ten categories have been defined.
The deliberations are reported under these headings:
  1. Data
  2. lnstitutional Matters
  3. Family Considerations
  4. Regionalization

5. Standards for Quality Assurance
6. Abuse and Overutilization
7. Professional Education
8. Family Education and Public Awareness
9. Research
10. Finance and Reimbursement

Most of the topics cut across the lines into more than one of the above
categories, so that reference may have to be made to more than one section
in order to find all the suggested strategies for any given topic.

CATEGORY 1: DATA

There is a need for accumulation, dissemination, and utilization of data.

DEFINITION OF THE ISSUE AND ITS EFFECTS:

If we had adequate epidemologic and demographic information we
would be better prepared to develop programs for the care of ventilator-
dependent children.

On a case-by-case basis we have figures which demonstrate significant
dollar savings for home or community care, when contrasted with in-
hospital tertiary care, but these numbers need to be refined and monitored.
Because such a limited number of programs for home care are now func-
tioning, we have not been able to accumulate data for the "ripple" which
the move of large numbers of ventilator-dependent children from tertiary
units might have on the financial structure of the medical system as a whole.

32


SUGGESTED STRATEGIES

1. Convene a working group to define, within a time frame, the needed
information. The group should have representation of economists,
statisticians, and health care providers.
2. Implement a continuing data collection and information system.
3 Disseminate the collected information to organizations and reim-
bursing agencies which can apply it to improving care and financing.
4. Conduct epidemological studies to follow the natural history of dis-
eases which leave children ventilator-dependent.
5. Conduct a survey to determine the current patient care and reim-
bursement status in each of the States.
6. Conduct cost-effectiveness studies to assess the quality and costs of
care in various settings.

CATEGORY 2: INSTITUTIONAL MATTERS

Multi-tiered institutional models should be adopted to provide cure for
ventilator-dependent children. There are 3 major groups: acute care facilities,
transitional units, and non-institutional alternatives.

DEFINITION OF THE ISSUE AND ITS EFFECT

Acute care facilities should be reserved for care from the onset of medical
crisis until stabilization. Transfer should then be effected to a transition, in-
termediate, or rehabilitation unit to prepare for long-term placement. Very
few such transitional centers are now available for ventilator-dependent
children. As a result, many children remain domiciled on expensive acute
care units for far longer than is medically necessary. There have been seri-
ous barriers impeding transfer to home. There are almost no facilities for
non-institutional living for those ventilator-dependent children for whom
the biological home is not a viable alternative. Eventual placement in a
home or home-like community-based living arrangement should be the goal
for these children.

SUGGESTED STRATEGIES

1. Promote the development of transitional units, such as intermediate
care centers or rehabilitation facilities that are pediatrically
oriented.

2. Devise non-institutional, home-like living arrangements, such as
group-living with shared services, foster homes, or subsidized adop-
tion.

3. Work to remove the social and economic deterrents and barriers
which prevent transfer to care at home.
4. Develop precise clinical and social criteria for transfer from one
level of care to another.

5. Provide financial aid for tertiary units to allow them a major role in
preparing patients and families for transition.

33


6. Provide for study of European programs of group living arrange-
ments, which have been in successful operation for a number of
  years.

7. Study the effects on tertiary care financing after the long-term, ven-
tilator-dependent children are moved from the tertiary beds.
8. Develop regional affiliation among institutions at the various levels.
Provide financial incentives for those institutions participating in
such a consortium.

CATEGORY 3: FAMILY CONSIDERATIONS

Starting at the earliest acute stages, the family must be encouraged to de-
velop a strong involvement in the care of the ventilator-dependent child.

DEFINITION OF THE ISSUE AND ITS EFFECTS

The family of the ventilator-dependent child is often overwhelmed by the
process of coping with the acute phase of the child's illness. The family unit
is disrupted by the persistent encroachment of a new way of life for which
there has been no preparation. Because of this devastating strangeness, the
parents can easily come to rely on well-intentioned "professional parental-
ism" in their early decision making. As the patient stabilizes and becomes
ready for an alternative to an acute unit, the family may have become too
functionally paralyzed to participate in the process of considering such al-
ternatives. After care at home has been inaugurated, continuing monitoring
of family function must ensue.

SUGGESTED STRATEGIES

1. Encourage an early "bonding" process for the family to come into
intimate physical contact with their child as soon as it is comfortable
for them to do so.

2. Have the family assume as complete a responsibility and authority
as possible from the earliest stage in the illness. This should be done
in consultation with health and social service professionals.
3. Develop tools to assess the family's readiness for each transitional
step.

4. Make parent counseling, mental health assistance, and specific ther-
apy available where indicated.

5. Aid in formation of parent support groups and a parents'network
for exchange of information and feelings.
6. Hospital staff education should be directed towards sharing respon-
sibility with the parents in whatever way is compatible with the best
medical care for the patient.

7. Provide for respite assistance for the family with a child at home.
8. Assist in structural changes in the home which make it easier for the
ventilator-dependent child to lead as normal a life as possible.

34


9. Enhance payment of outstanding vouchers promptly, so that the
family does not have the added burden of unpaid bills. A system
should be inaugurated with third-party payers for advance alloca-
tion of reimbursement, so that the family can plan a reasonable fi-
nancial budget with knowledge that monies are available when
needed.

CATEGORY 4: REGIONALIZATION

All institutional, social, service, financial, and professionat functions on
behalf of the ventilator-dependent child should have regional coordination. A
regional system can be developed at State level, across State lines, or intra-
state, and with tertiary care center participation. The strongest emphasis
should be on the community-based component of the regional system.

DEFINITION OF THE ISSUE AND ITS EFFECTS

The ventilator-dependent child at home needs essential services. At pre-
sent, there is no coordination of delivery of these services, nor are there uni-
form methods of payment. There is, as one group put it, "no one in
charge." A regional system for coordination of efforts can be developed
within and among organizations which already exist, with each regional sys-
tem responsible for defining and arranging each of its levels of service.

SUGGESTED STRATEGIES

1. Grants from the Federal level should be provided for pilot projects
to delineate implementation issues in developing the structure of a
new regional system for delivery of care.

2. Encourage communication among all providers of medical and
nursing care, education, social services, recreation, transportation,
psychosocial support, emergency services, equipment vendors, and
respite assistance at the community level. This will enhance the co-
ordination of community assets into the regional system and allow
for easy entry of the patient into these facilities when transferred
from hospital-based care.

3. Funding must be found to develop regional systems beyond the ini-
tial pilot projects. In time, the regional systems should become self-
sustaining.

4. Public and private reimbursing agencies should participate in the
development of the regional system. Such participation will allow
for a more rapid solution of problems, with resultant savings. Those
agencies which already exist for the family should be incorporated
into the financial plan, whether Medicaid, Crippled Children's
Services, Blue Cross/Blue Shield, or private insurers.
5. The coordinating center should accept responsibility for the
patient's transition from one level of care to another.

35


6. The regional system should be developed with the objective of pro-
viding coordination of all community resources for the humane care
of the child in the least restrictive environment compatible with
medical status.

CATEGORY 5: STANDARDS FOR QUALITY
ASSURANCE

Standards should be developed and quality assurance controls should be
built into both institutional and community-based programs.

DEFINITION OF THE ISSUE AND ITS EFFECTS

Standards should be written for the various levels of institutions and non-
institution living arrangements, as they are being developed. Most impor-
tantly, standards should be set for the essential services and personnel which
are necessary to support the ventilator-dependent child in the home. Quality
controls cannot be instituted until minimal standards for services are estab-
lished. The family of the patient will be able to make better decisions on
contracting for services when they have standards to guide them.

SUGGESTED STRATEGIES

1. Professional organizations should be encouraged to work together
to establish and promulgate needed standards of care.
2. Each system should provide a qualified home discharge team and
should implement a post-discharge monitoring mechanism.
3. Standards should be established for medical criteria.

CATEGORY 6: ABUSE AND OVERUTILIZATION

There is a concern that abuse and inappropriate utilization will occur
once systems are established for providing improved services for the ventila-
tor-dependent child.

DEFINITION OF THE ISSUE AND ITS EFFECTS

Technology may be used inappropriately, and there may be inappropriate
use of personnel and equipment. Patient populations may enter into the sys-
tem by way of unwarranted discharges to home care or because patients now
on mostly self-sustained home care may apply for entry into the system.

SUGGESTED STRATEGIES

1. Establish safeguards against abuse and inappropriate utilization
and provide for monitoring in the regional systems.
2. Establish standards and/or regulations to insure against cost ineffi-
ciency for all services provided.

36


3. Insure charges for community based services (i.e., group homes) are
realistic and monitored to prevent abuse.
4. Set up central purchasing of equipment with loan or rental to the
appropriate patient population.
5. Inaugurate monitored competitive bidding for equipment and pro-
vision of services.

6. Review past experiences of national programs requiring complex
medical technology to identify problem areas and identify ways to
avoid similar problems.

CATEGORY 7: PROFESSIONAL EDUCATION

Personnel delivering care at all levels must be adequately educated.

DEFINITION OF THE ISSUE AND ITS EFFECTS

Professionals often find it difficult to work with the disabled because of
attitudinal problems. They must develop sufficient background associated
with the problems of disability and the needs of the extended families very
early in the course of their training. Training of professional personnel must
take place at all professional levels of pre-service and in-service education to
allow updating and familiarity with new techniques at all levels. Medical,
nursing, and allied health schools, schools of health administration and
economics, business schools, and biomedical engineering centers should be
involved.

Paraprofessional workers are an important part in the service delivery sys-
tem and must similarly receive basic and appropriate continuing education.

SUGGESTED STRATEGIES

1. Incorporate education for care of the disabled into the curricula of
higher learning.

2. Inaugurate and supervise an education program for health workers
as a major function of the tertiary centers in the regional system.
3. Develop a national clearinghouse to allow for access to resource
material.

4. Sponsor continuing education courses aimed at professional and
paraprofessional personnel.

CATEGORY 8: FAMILY EDUCATION
AND PUBLIC AWARENESS

The public remains unaware of many of the problems of the disabled.
Families of ventilator-dependent children need ongoing educational sup-
port. Ventilator-dependent patients must be included in the educational
mainstream when possible.

37


DEFINITION OF THE ISSUE AND ITS EFFECT

Sl

The public, and particularly the legislators, is unfamiliar with the needs
of ventilator-dependent children. They are not aware of the beneficial ef-
fects on our social structure when the disabled are transferred to a more
normal, productive life in our communities. Parents need continuing educa-
tion from the earliest stage of the child's disability through the transition
which results in the ventilator-dependent child being cared for at home. The
child's education becomes one of the most essential services in planning for
care at home.

SUGGESTED STRATEGIES

1. Groups should be formed to increase public awareness.
2. Government officials and third party payer executives at all levels
should be made aware of the cost and humane benefits which result
from a system of community care for the ventilator-dependent
child.

3. Parents' groups should be formed to keep parents informed of their
rights.

4. A national clearinghouse should be devised to provide parents with
information about care and specific services for their children.
There should be local community outlets for such a center.
5. Liaison should be developed with the community school system to
allow for tutoring and entry, and, if possible, mainstreaming the
child into the system.

6. Ongoing education experiences for the child and family must be
provided by or arranged by the health providers.
7. Education of the child should be a part of the case management
plan.

CATEGORY 9: RESEARCH

Basic research aimed at prevention of disability is of major importance.
Research is needed also to define the problem more thoroughly and to in-
vestigate and evaluate possible solutions.

DEFINITION OF THE ISSUE AND ITS EFFECTS

We have very few programs for the delivery of care to the ventilator-
dependent child that extend beyond the acute care unit of the tertiary cen-
ter. We have presented the case for the benefits of care at home. As pro-
grams for these children evolve, careful research and evaluative studies
must be conducted.

(

fl

n

I:

t
t


SUGGESTED STRATEGIES

1. Research should be undertaken in those factors which could im-
prove the outcome of pregnancies.
2. Regional systems as they are developed should contain a research
component.

3. Research on treatment interventions to measure outcomes should be
undertaken.

4. Research is critical to measure cost effectiveness. There should be
an immediate cost effectiveness study of the functioning programs
in Pennsylvania, Illinois, and New York, with particular attention
to the true dollar and social benefits of the various alternatives.
5. Research of other financial and reimbursement issues (e.g., prepay-
ment plans) should be pursued.

6. Research should be undertaken to determine effective methods for
education of professionals and for patient education.
7. Research is needed to establish qualifications necessary for person-
nel to participate in the management of ventilator-dependent chil-
dren in various settings in a r;gional system.
8. Research should be an integral part of any of the strategies imple-
mented as a result of this Workshop.

CATEGORY 10: FINANCING AND REIMBURSEMENT

Financial and reimbursement considerations are the overriding deterrents
to rhe care of ventifator-dependent children in the least restrictive, most hu-
mane environments compatible with their medical needs.

DEFINITION OF THE ISSUE AND ITS EFFECTS

On a case-by-case basis, it has been demonstrated that considerable savings
can be achieved by providing for the more satisfactory and humane care of
ventilator-dependent children at home or in homelike alternatives in their
communities. Unfortunately, our current private financial, insuring, and
reimbursing systems did not evolve from a base designed for funding of care
for children with chronic or long-term health problems. As the number of
ventilator-dependent children increases, financing has to be restructured to
deal with the new problems. The processes for paying expensive in-hospital
acute care bills function fairly smoothly to certain limitations. On the
other hand, the processes of funding community based care of ventilator-
dependent children is uncoordinated, and in many situations, non-existent.

When a child is successfully transferred home, reimbursement becomes
very complicated. A multitude of essential services is provided by a great
variety of agencies, individuals, and vendors. The bills from all these
sources are accumulated by the reimbursing party and must, in most cases,
be analyzed and paid individually. Time is lost; statements are paid late;
billing errors are common; both creditors and reimbursers become frus-
trated; and, as a result, the already difficult process of care at home be-
comes more cumbersome.

39


The reimbursement and financial systems for long-term community care
of ventilator-dependent children need restructuring for flexibility and
modernization.

SUGGESTED STRATEGIES

1. Work with major providers of third-party payment to improve re-
imbursement schedules.

2. Encourage maximum coordinated participation by government and
private reimbursement agencies and in regional systems.
3. Develop methodology for advance reimbursement to families of
children on care at home. Allocations of a specified amount of
money should be made prospectively to be used over a finite period
of time. Incentives should be built into this system to control costs.
4. As a corollary of the above, a new method of managing vouchers
from individual service suppliers should be developed. Up-front
money or bank accounts should be provided to allow for prompt
payment of bills. Retrospective reimbursement should be eliminated
or, at least, minimized.

5. Methods should be developed for "pool" purchase of equipment
where that is found to be medically appropriate and more cost-
effective.

6. Title V should play a major role in planning, promoting, and devel-
oping regionalized systems of care utilizing all available resources,
rather than serving only as a third-party payer for small number of
"eligible" children.

7. Financial counseling should be made available to the family.
8. Tax credits should be allowed for changes in the structure of the
  home which are necessitated by the child's disability.
9. The tax deductibility of medical expenses should be liberalized for
families of patients on care at home.
10. Government requirements for "spend-down" should be minimized
  or eliminated.

Il. Current policies and procedures for waiving Medicaid eligibility re-
quirements should be kept in place.
12. Hospital cost containment processes should be encouraged and
monitored to minimize the escalating cost to the system as a whole.
13. Coordination and management of services to children within a re-
gional system of care should be recognized as essential; financing
mechanisms should be developed.

14. Possibilities for arrangement of catastrophic illiness funding, disas-
ter pools, or revolving accounts should be investigated.
15. The financial support system for ventilator-dependent children
should be closely monitored and modified as necessary to prevent
  abuse.

16. All changes made in the financial support system for ventilator-
dependent children should have as their underlying objective the at-
  tainment of the most humane care in the least restrictive environ-
  ment and at the lowest cost.

40


CHILDREN WITH OTHER

I-KANDICAPS

CHILDREN WITH DISABILITIES:
IMPLICATIONS FOR CARE

Alfred Healy, M.D.

In November 198 1, President Reagan cited the case of Katie Beckett, a 3
year old child, as an example of government regulations gone awry. Medi-
caid rules permitted payment for Katie's care in a highly intensive tertiary
hospital but could not pay for care if Katie was taken home. President
Reagan granted a waiver to permit payment for Katie's care at home.

The highly visible case of Katie Beckett publicized a health care delivery
system that was not geared toward providing the best of life-sustaining
technology in what we, in the area of services to the handicapped, would
call "the least restrictive environment." The goal of providing services in
the least restrictive environment is basically a humanitarian one. However,
what has been most publicized about the case of Katie Beckett and similar
ones is that this least restrictive environment is also often, dramatically, the
least expensive one in which to provide services. What can we learn about
health care delivery for this population of ventilator-dependent children,
and how do the issues relate to our provision of services for handicapped
children as a whole? Are there common elements to assist us in understand-
ing the needs of children with disabilities?

First, we need to review both the children's health care system in general,
and services to children with handicaps, as they exist in this country today,
and then examine some of the factors that have influenced their develop-
ment. Second, I would like to discuss a community-based evaluation and
planning system for those children who have a high likelihood of living with
restrictions on their functional lives-and to suggest methods we might use
to reduce that likelihood.

Children's health care in this country is changing. Every person, whether
provider or consumer, who has the opportunity to observe the process of
health care delivery, or to measure its outcomes, must be impressed with the
way the system has changed and continues to change in a very positive man-
ner. Signs of positive change can be seen in increases in life expectancy and
tremendous reductions in morbidity. Mention only needs to be made of po-
liomyelitis, erythroblastosis, and modern therapeutic approaches to child-
hood malignancy to confirm the occurrence of these changes.

Similarly, the status of children with disabilities in this country is chang-
ing. Those working with the education, therapy, counseling, housing, em-
ployment, or social needs of the handicapped-and with parents, neigh-
bors, and friends of the disabled-are aware of the tremendous changes
that have occurred in this field in the past two decades. Indicators of these
changes include the early identification of those with disabilities and the re-
moval of numerous barriers that interfere with opportunities for children
with disabilities to become productive citizens.

41


Let's now review a few of the reasons why the health care system in gen-
eral is evolving in this way. A number of trends have contributed to positive
changes, including:

1. A significant increase in the availability of individual and personal-
ized health care. The number of health care personnel has expanded
and the fiscal and physical accessibility of health facilities has im-
proved.

2. An increased personal involvement of patients and parents in as-
suming responsibility for their own health care. This involvement
resulted from improved patient education and involvement in the
decision-making process regarding the type and location of the re-
quired health service.

3. A recognition that services must be delivered or made available as
close to the patient's home community as possible.
4. A realization that technical and human resources need to be tar-
geted at patients with specific problems and that it is possible to
measure accurately more subtle outcomes than mortality or gross
morbidity.

5. An increased ability to move quickly from the research laboratory
to clinical investigation followed by clinical application.

What then are the specific factors that assisted the growth and improve-
ment of programs for some of the disabled, and how did those forces
evolve?

1. Care became individualized. There was a shift in thinking from "All
Down Syndrome children are alike," to "All Down Syndrome chil-
dren require a continuum of evaluation services to document their
individual strengths and deficits."

2. The settings for providing required services were critically examined
and, in many instances, found to restrict the development of social,
intellectual, and functional life skills. As a consequence, consider-
able numbers of children and adults moved from institutional set-
tings and were placed in community-based residential homes and
care facilities.

3. Parents and guardians became involved in decisions regarding their
children's participation in educational programs and the provision
of related services.

4. Patients and their parents or guardians were provided specific legal
safeguards to ensure their participation in or knowledge of pro-
grams through such legislation as PL 94-142, The Education for All
Handicapped Children Act, and Section 504 of the Rehabilitation
Act of 1973.

5. Statewide planning for coordination of services was mandated, and
specific accountability was required of states to ensure the delivery
of services. These changes were seen in PL 94-142 and in PL 95-602,
The Developmental Disabilities Act, and in some aspects of the
Health Block Grants.

42


6. Many programs were devised that implemented the interdisciplinary
process, one that recognizes the need for a variety of professional
expertise in the evaluation and care of disabled persons and that no
one discipline has exclusive "rights" to a patient, irrespective of the
problem or the "importance" of the discipline.

How do these trends in the health care system and the service system for
the disabled relate to the problem facing this conference? What can we learn
that will assist all handicapped children-and conversely, what elements of
the care system for the disabled child can be applied to the problem of the
ventilator-dependent child?

A cohort of children with respiratory conditions was identified that re-
quired a specific technological advance- the creation of appropriate respi-
ratory life support systems so these children could lead independent lives.
But the creation of the technological hardware did not resolve the clinical
problem. The remaining problem is to identify successfully the social,
political, educational, attitudinal and financial steps which will allow the
available hardware to be placed in the hands of those children who
desperately require it, and do so in a coordinated manner that does not
burden the patient or the parent with overwhelming financial responsibil-
ities. We also must provide this ventilatory assistance in a way that will least
interfere with the child's developmental process. When we have minimized
financial burdens and developmental interference, our system can be said to
be operational. Our service delivery goals for the approximately seven to
eight million other children who are labeled as handicapped in this country
are very similar.

An important step in the achievement of these goals is the differentiation
between a person who is disabled-one who has a condition or infirmity
that interferes with life function-as opposed to a person with handicaps
because either society or the person himself places barriers in the path of a
functional life, barriers to living in "a least restrictive environment." Such
barriers may be physical (the inability to enter a building in a wheel-chair
because of a flight of stairs), discriminatory (the exclusion from qualified
employment), or attitudinal (the lack of understanding of some health care
financial underwriters that out-patient care may be less expensive and more
useful in maintaining academic and social interests than in-hospital care).

Katie Beckett requires a ventilator for a health impairment, but she also
desperately requires an environment in which to learn how to play and to
delight in gaining developmental skills along with her peers. She requires an
environment that will provide exciting sensory stimuli so she has facts and
data to develop concepts and ideas, and she needs the opportunity to prac-
tice muscular skills so she may communicate with her world through the
motor system. She also requires a nurturing and supportive social sys-
tem-read "family" if at all possible-to surround her and react to her be-
havior so she may learn from her actions and those of her playmates.

We must not interpret  "least restrictive environment" to mean
"normal." Universal mainstreaming is as inappropriate as blanket institu-
tionalization for disabled children. A home can be as restrictive as an insti-
tution if the child is not given every opportunity to develop. The bottom line

43


questions should be, is the child being given every opportunity to learn or
develop inherent abilities and have we, as a responsible society, removed all
barriers and placed the child in the most opportune setting for develop-
mental interactions to occur?

In this country there are hundreds of ventilator-dependent children in ter-
tiary care centers. Many of these children no longer need to be there. There
are also hundreds of thousands of children in this country with health im-
pairments or other disabling conditions who are alive today because of ad-
vances in scientific knowledge and its clinical application. Children with
cystic fibrosis, hemophilia, arthritis, malignancies, muscular dystrophy,
and other conditions now survive longer and demand full active participa-
tion in life. We have obligations to remove the barriers to active functional
lives for all of these children.

These children and young adults with health impairments face similar
problems in receiving known methods of optimal care, in the least restric-
tive environment. One barrier facing them is the inability of many health
care personnel to recognize the need for a system to plan individualized
non-hospital care for each patient in a manner that permits all social,
health, education, and family resources to be parlayed into a continuum of
care. This barrier is a common thread running through all care systems, in-
cluding in-hospital care, but I wish to emphasize today the out-of-hospital
need. This community need has been recognized for decades, but the solu-
tions for implementation continue to escape those charged with ensuring ac-
cess for all children to optimal community services. This need to use
available community resources through effective communication and plan-
ning is especially important today when such a large percentage of in-
hospital costs are due to utilization by a rather concentrated segment of all
children, namely children with chronic disabilities restricting their func-
tional life.

To function properly as part of the comprehensive services for handi-
capped children, a health care plan must consider the handicapped child not
as a sick child but as a well child with a disability. There is still a tendency,
even among some health professionals, to view the handicapped child as
unwell and to see health care being performed in a segregated environment.
A mentally retarded child, or a blind child, for example, may not have any
unusual health-related problems. In other cases, the handicap itself may be
health related, or may have chronic health-related aspects to it-such as in
the case of the child with asthma or the child with spina bifida. In any case,
the children are best and most economically cared for in the mainstream of
the health care system, where they have access to the full range of primary,
secondary, and tertiary services, not in a system set aside for the exclusive
use of the handicapped.

It is especially important to understand that the comprehensive services
required by children with handicaps will vary with the functional system or
systems affected and the severity of the impairment. At birth, two percent
of all liveborn infants have discernible handicapping conditions. By age
five, approximately ten percent are considered handicapped. There must be
a recognition that we require differing screening and identification systems
with differing capabilities during that five-year period. We need to structure

44


a system that flows from a medical/nursing orientation for infants and tod-
dlers under 30 months when almost all discernable or evolving handicaps
are health-related, to a cognitive orientation with an educational perspective
for the older child. This is a time when almost al1 new disabilities are related
to the central processing system. Development-appropriate screening activi-
ties can then be provided that are cost effective and reduce duplication of
effort. However, to be efficient, a process of communication must be es-
tablished between the child's physician and the school during all such iden-
tification projects.

It must be remembered that during the elementary-school years, the ma-
jority of disabilities are related to the central processing system. Of the eight
million handicapped individuals aged between birth and 21 years, only 20
percent have handicaps related to sensory deficits, motor disabilities, health
impairments, or emotional disorders. The remaining 80 percent of all
school-aged children with handicaps have mental retardation, learning dis-
abilities, or language dysfunctions. Of this 80 percent, the majority have
single system disabilities, those without complicating secondary disabilities
that require a major coordination of services.

There are few, if any, studies to assist in understanding the percentage of
children with disabilities who require primary, secondary, or tertiary level
care of their health or medical needs. Discussions with experienced clini-
cians suggest that approximately 85 percent of all children with disabilities
can be adequately cared for by primary care physicians communicating with
the one "system" used by all children, the school. An additional I5 percent
require referral to secondary physicians. Many have secondary compli-
cating conditions that require coordinating functions between the primary
referring physician and other community-based services or assistance agen-
cies. Of the 15 percent requiring secondary level services, about one-third
will also require, either occasionally or continuously, the medical or health
care services of a tertiary center.

Approximately 85 percent of the health and medical needs for children
with handicaps can be provided through the primary care system, aided by a
modest level of communication between the physician and the school, as the
physician provides ongoing health care supervision. Examples would in-
clude children with non-organic mental retardation, uncomplicated seizure
disorders, or language dysfunctions. The primary care physician has a re-
sponsibility to ensure that all medically remediable aspects of the handi-
capping condition have been evaluated and treatment initiated if possible.

Secondary level health care and coordination of many health and non-
health-oriented services is required by three groups:

1. Those children referred from primary care physicians for diagnostic
services, or evaluation of complications from their original disability.
2. Those labeled health impaired-such as children with cystic fibro-
sis, hemophilia, juvenile rheumatoid arthritis, asthma, diabetes,
cerebral palsy, or muscular dystrophy, of such a degree of severity
they require a level of care greater than that available in the primary
care system.

45


3. That group of children with complicated and interconnected health,
social, and educational needs labeled as having "chronic conditions
requiring long term care; of psychosocial and learning problems;
behavioral and environmental effects; and problems related to
family stress and parental actions and inactions. These problems re-
quire a multidisciplinary approach above and beyond traditional
nursing and physician care." The basic need for this group is coor-
dinated care as opposed to the direct provision of medical care.

Tertiary level care is required for that five percent with disabilities such as
severe asthma, cystic fibrosis, cerebral palsy, muscular dystrophy, spina
bifida, or similar conditions that require the expertise of those usually
found in a medical center or university program. Irrespective that such care
requires highly specialized personnel and sophisticated surgical and
rehabilitative technology and treatment methods, the majority of the
follow-up care to such tertiary care procedures is accomplished back in the
local community using community resources. Studies have been accom-
plished that demonstrate cost efficiency when such community care is coor-
dinated with that done in the tertiary center.

From these discussions, we can draw three important conclusions relating
directly to the original question, "Will the disabled children of this country
also continue to be handicapped?"

First, there is a constant need to recognize the concept of individual dif-
ferences in all children-especially those with disabilities-so that they may
receive appropriate services. Not all children with cerebral palsy should be
programmed with the mentally retarded; not all ventilator-dependent
children require the same system as Katie Beckett--if our system is to min-
imize financial burdens and minimally interefere with a disabled child's
development.

Second, there is a need to structure a community-based system to coor-
dinate the evaluation and planning of services for the fifteen percent of dis-
abled children who have complicated or multifaceted disorders and to
recognize that this entails more than medical or nursing care. There must be
a smooth flow of information between all social, medical, educational, and
family concerns; responsibility and accountability for providing and follow-
ing up on services must be assigned and accepted.

Third, there must be a realization by all the remaining service providers,
health planners, legislators, and health financiers, that such community-
based evaluation and planning is necessary if barriers to maximum achieve-
ment for all disabled persons are to be removed.
There is no one uniform formula to guide individual communities toward
such a system. Each state must review its individual health, education, and
social service state plans that meet the state's individual geographic,
political, and demographic needs; each state must work cooperatively to
create a community-based system for those disabled children who require a
coordinated evaluation and planning function.
This workshop is an important step toward developing such a system.
Using the ventilator-dependent child as a focus for concentrated discussion

46


and planning will undoubtedly alert many persons to the need for the sys-
tem. However, the larger effort must be in furthering communication be-
tween state Maternal and Child Health programs (including Crippled
Children's Services), with state education agencies, local education agen-
cies, and those professional organizations whose members have critical
roles to play in formulating new methods of sharing evaluation and plan-
ning functions. This effort is currently underway in twelve states due to very
innovative collaborative efforts funded by the Office of Maternal and Child
Health and the Office of Special Education, and involving the American
Academy of Pediatrics and the national network of University Affiliated
Programs.

Other states have combined planning functions between State M and CH
and State CC programs as they move to plan cooperatively and implement
the provisions of block grants. Not surprisjngly, state educational agencies
are finding these extremely useful forums in which to participate and fur-
ther mutual goals.

A last but extremely critical need-is for each person attending this
Workshop to realize the tremendous task remaining before us. Our task is
to educate our fellow workers and to influence schools preparing psychol-
ogists,  insurance executives, physicians, nurses, dentists, therapists,
teachers, social workers, lawyers, business executives, and administrators
about the needs discussed in this Workshop. Our personal actions can be
multiplied a thousandfold if we accept the challenge of working with our
University and Community College peers to include these concepts in their
students' professional preparation and in the in-service education programs
available to practicing professionals. In addition, we must share a similar
education program with parents of disabled children and with the general
public.

The best of available science was not able to prevent Katie from becoming
disabled-even in the sophisticated, caring system currently in place. Con-
ferences like this one should go a very long way to remove barriers that
could bar her from enjoying a full productive life, barriers that could also
make her become handicapped. Thank you for allowing me to share these
thoughts with you today.

47


IMPLICATIONS FOR CARE:
THE TITLE V PERSPECTIVE

John C. MacQueen, M.D.

Title V programs have the legislative responsibility for providing health
services to mothers and children. The Title V programs include the State
Maternal and Child Health and the State Crippled Children's programs as
well as the SPRANS (Special Projects of Regional and National Signifi-
cance) programs. These programs include the pulmonary center, the ge-
netic, the hemophilia, and other programs of regional and national signifi-
cance. State programs have been designed to meet the particular needs of
each individual State, and thus differ from each other. In addition, each of
the SPRANS programs has its own agenda.

Those of us from State programs are not surprised that a new type of
medical problem-that of the ventilator-dependent child-has been identi-
fied and that a proposal is made to provide services for the children so in-
volved. The Federal-State public health programs for mothers and children
have been developed over the years to provide new services for what were
then new problems. The early regional programs to provide care for con-
genital heart disease, rheumatic fever prevention, cleft-palate, PKU identi-
fication, development of pediatric intensive care, hemophilia, and genetics
programs were created when new problems were identified for which a form
of treatment was available. Each of these programs was originally intro-
duced at some type of meeting or conference similar to the one that we at-
tend today.

Those of us from agencies involved with providing services for handi-
capped children also recognize that the services needed by the ventilator-
dependent child are in many ways similar to those needed by hundreds of
thousands of other disabled children in the nation. Thus, carefully devel-
oped programs meeting the needs of the ventilator-dependent child have
been designed: so that the services are family oriented, multi-disciplinary,
and coordinated. Each child has an individual plan of care, and some per-
son is responsible to work with the family to assist in carrying out that plan
of care so that the costs of the services do not destroy the family's finances.
The goal of treatment is one of establishing as much personal independence
as possible. These, of course, are the accepted principles of long-term care
that have been tested and established during recent decades by those in-
volved with providing services for children with continuing health problems.

Thus, the proposed programs providing services for the ventilator-
dependent child differ from the current ones only in the technical nature
and complexity of the services needed to address problems unique to these
children. This should not surprise us. We are all aware of advances made in
the last decades in the diagnosis of acute medical problems and in the diffi-
cult and technical forms of treatment. Many of these services may be so
technical, however, that the current State Crippled Children's programs,
designed to provide traditional services, may have difficulty in providing
for these new technologies. This represents a major challenge to those of us

48


responsible for the design and administration of State programs. Title V
programs must respond as they have responded to the development of new
programs in the past, even though this may require major changes in the de-
sign of some State programs.

Many of us who are responsible for State Crippled Children's Programs
have been concerned for some time that services for handicapped children
have not evolved into a three-tiered system comparable to the three-tiered
American medical care system. The exact role of the Title V programs and,
more exactly, theCrippledChildren's programs in such a three-tiered system
is not clear.

It is apparent that State Crippled Children's Programs must work jointly
with those who function in the tertiary care centers, since these centers pro-
vide much of the complex technical modern care and conduct research. Sim-
ilarly, crippled children's programs must work closely with practicing physi-
cians who provide secondary care. Historically, these programs have worked
closely with the medical community and have made it possible for the State
Crippled Children's programs to be the major subsystem for providing serv-
ices for the disabled child. Crippied Children's programs must work even
more closely with organizations and professionals who provide primary
support services in the community.

Reference has been made to special demonstration projects jointly con-
ducted by the Division of Maternal and Child Health and the Department
of Education. These projects are exploring how children's services can best
be coordinated in the community. The Crippled Children's programs can
and should serve as the lead agency in the community to coordinate the net-
work of services required by many children who have chronic health prob-
lems and can be involved with payment for those services for which they are
responsible.

It would be very unfortunate if free-standing State categorical programs
were created to provide services for the ventilator-dependent child. The crea-
tion of single disease programs has not proved to be a satisfactory long-term
solution. State Title V programs, therefore, should have a significant part in
the coordination of services required by ventilator-dependent children.

There is no doubt that our national goal should be access to needed serv-
ices for all ventilator-dependent children, but the problem of implementing
that goal will be very difficult. We must be realistic about the times in which
we live. In current national policy, the States determine what public health
programs should be provided based on the individual State's assessment of
need and available resources. However, the great majority of States do not
have in place a process or system to review the needs for health services.
Most States are in great financial difficulties and are going to be very reluc-
tant to assume the responsibility for new health programs.

Thus, implementation of the recommendations of this conference will re-
quire imagination in program organization and may require more political
activity than those of us who are health providers wish to conduct. The
Pennsylvania experience proves the possibility of obtaining state funds.

From the perspective of the Title V program, the basic question is how, at
this time of public austerity, can we modify and coordinate health programs
so we can provide contemporary medical care to the most children? Those
of us responsible for Title V programs accept the challenge and will keep
high on our agenda the special problems of the ventilator-dependent child.

49


IMPLICATIONS OF WORKSHOP RECOMMENDATIONS

This Workshop focusing on the ventilator-dependent child has given us a
concrete and meaningful way to look at the needs of all children with dis-
abilities and at the needs of their families. The ultimate value of the confer-
ence will be determined by its effect on those involved in the care of children
with handicaps. The recommendations presented to the Surgeon General
have implications for the care of all children with disabililties.
1. Define the Scope of the Problem

There remains a need to define better the numbers and types of disabili-
ties experienced by infants, children, and young adults in this country and
to better assess the impact on social, health, education, and family related
needs. Considerable progress has been made in some areas but a system in-
tegrating functional, social, health, and family concerns remains to be de-
fined, accepted, and consistently used by all service personnel and agencies.
Needs are magnified when they occur during rapidly changing developmen-
tal periods in a child's life or when the child is desperately attempting to
minimize the effects of the disability.
2. Develop Model Standards

Significant advances in health care for all children have been accom-
plished through the use of model guidelines and standards for health care.
Examples include regionalized perinatal care and improved access to immu-
nizations. These models and standards developed by a consensus of profes-
sional associations, were widely distributed and are now generally accepted.
Similar models and standards must be developed to identify, evaluate, and
provide coordinated care at all levels for persons with disabilities. Care
standards for cohorts of disabled children with special needs must be super-
imposed on generic care standards for all children with disabilities. All
standards must focus on family needs, with an eye for innovation and with
compassion and concern for the quality of life for each disabled child. Care-
ful consideration must be given to identifying methods of care that conserve
and effectively use scarce fiscal and human resources.

3. Develop Systems of Regionalized Care

Matching the needs of disabled children with available resources will de-
mand a system of care that reflects concern for generic social, educational,
health, and family issues and that can focus on times of transition in dis -
abled children's lives. Targets for concentration of resources will be deter-
mined by such factors as incidence, prevalence, and severity of the disabil-
ity; location of the needed service, and other geographic and demographic
characteristics of the population. Traditional methods may suffice for pro-
viding community based health care for infants, children, and young adults
with relatively uncomplicated disabling conditions. However, regionalized

50