U.S. DEPARTMENT OF EDUCATION

‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ x

IDEA PUBLIC MEETING ON THE PROPOSED :

REGULATIONS TO IMPLEMENT PROGRAMS :

UNDER THE INDIVIDUALS WITH :

DISABILITIES EDUCATION IMPROVEMENT :

ACT OF 2004, PART C :

‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ ‑ x

Indiana Government Center

Conference Center

402 West Washington Street

Indianapolis, IN 46204

The above‑entitled matter came on for meeting,

pursuant to notice, at 4:00 p.m. Jim Button,

presiding.

P R O C E E D I N G S

(4:00 p.m.)

MR. BUTTON: Good afternoon. It\'s nice to see

you all again. I think I met most of you as you

were coming in. It\'s nice to have you all.

This is the third of our four Part C meetings.

We\'ve had one in Portland and one in Oklahoma City,

and now this is our third in Indianapolis. It\'s a

pleasure to be here.

We\'re going to have a couple of announcements

because the bathrooms and the way to get out of

here may be a challenge if it\'s after 5:30.

Dawn, do you want to just take a minute to

explain that?

MS. DOWNER: Yes. The restrooms, if you need

to go to the restrooms, they are just down and out

and on the left side here, or there are some more

through either of the main sets of doors by the

escalators. But these are going to be your closest

ones out to the left.

If you leave after 5:30, the doors in the

front are typically locked, so there should be

somebody there. If there is not anybody there

manning the doors to let you out, if they are sent

away to help somebody, there are some notes that

tell you how to get out, but basically it\'s just in

the basement. So take the elevator or escalator

down, and there is a tunnel walkway that will take

you out as well.

If anybody has any questions, you can come and

ask me, or the people at the desk outside know as

well.

MR. BUTTON: I would recommend after that

series that if you ever want to get out of here

tonight, you\'d better ask her. It doesn\'t appear

to me that the chances are good of leaving this

place after 5:30, and I doubt seriously if we\'ll be

through. We have several people that are going to

be providing comments.

In a minute, Mary Louise will tell you about

those procedures and how we\'re going to run the

meeting. I\'m Jim Button. I\'m the Director of

Communications for the Office of Special Ed and

Rehab Services in Washington, D.C. I work for John

Hager, the Assistant Secretary.

John sends his regrets for not being able to

be here tonight with you. I know he was originally

counting on it, but he\'s not going to be here, and

he wanted me to make sure that I relayed to you not

only his regrets for not being here, but that this

is a real opportunity for you to present comments

on an important part of the reauthorization, the

Part C reauthorization, and that we will take your

comments. We will listen to what you have to say.

We will analyze everything that you have to say

against the current regulations, and then we will

finally do final regulations.

You can be assured that what you spend in

terms of time here this evening will be well

worthwhile. We\'ll pay careful attention to it.

So, with that, I\'ll turn it over to Mary

Louise, and we will get started. Nice to have you

all.

MS. DIRRIGL: Thanks, Jim. I\'m Mary Louise

Dirigl, also from OSERS. And sitting here at the

table with me is Hugh Reid. And another one of our

colleagues is Katherine Race, who is out helping

with registration. Also assisting us with

registration is Rich Burden, who\'s the Executive

Director of INSOURCE, as well as his staff, Lesa

Paddack and Deb Marburger. And helping us with the

timekeeping is Ann Bailey.

We also have two interpreters with us today,

Felisa Wilson and Charles Maurer, assisting us with

the sign language interpreting. And our court

reporter today, to assure that your oral comments

are represented accurately, is Kate Andrews.

And as Jim mentioned, the purpose of the

public meeting is for you to provide input about

the Part C NPRM, which was published in the Federal

Register on May 9. The draft regulations

incorporate changes to the current Part C

regulations that are necessary for the department

to appropriately and effectively implement the

provisions of IDEA.

Your comments are important to us, as Jim had

mentioned, and we want to assure you that all of

your comments, oral and written, are taken into

account in the final regulations development

process.

Before we begin, let me just review some of

the procedures that we\'ll follow. Each of you that

indicated your intent to provide comments should

have received a number.

If you plan to provide comments, and you

haven\'t yet received a number, please go back to

the registration table to pick one up, and we\'ll

follow the sequence of numbers that you received at

the registration table. And as I indicated, we do

have a court reporter present.

As you begin your comments, please state your

name and the organization that you represent, if in

fact you do represent an organization, and I\'ll

also remind you of this as you come to the table.

You\'ll have five minutes to comment or to summarize

your written comments. The timekeeper will provide

cues for you as the five minutes are coming to

completion.

Please make certain, if you brought a copy of

your written comments, to leave those for us. If

you\'d like to us send us your comments, we

encourage you to send it electronically, by using

www.regulations.gov. You may also send them

through the mail at the address that\'s included on

the flier that was at the registration table.

Please keep in mind that we will not be

accepting comments via e‑mail or fax, and that the

75‑day comment period does end July 23rd. Any

comments that we receive after July 23rd, we will

not consider them. And, once again, we do

encourage that you use www.regulations.gov.

And, finally, just to remind you that this is

not a dialogue, but we are here to listen to you,

and that you have five minutes to speak. So, thank

you for being here.

Please state your name and the organization

that you represent.

DR. JAMES READING: First, I\'d like to say

welcome to Indianapolis.

MS. DIRRIGL: Thank you.

DR. JAMES READING: I\'m Dr. James Reading, a

speech‑language pathologist. I have taught in

university. I\'ve directed a clinic, and for the

past six years have provided early intervention

services to children as a speech‑language

pathologist.

I am licensed by the State of Indiana, a

member of the Indiana Speech‑Language‑Hearing

Association. I also have a Certificate of Clinical

Competence, and am a member of the American

Speech‑Language‑Hearing Association.

I would like to address two issues within IDEA

Part C proposed rules. The first issue is

personnel standards. The proposed regulations

remove the provision that requires state education

personnel standards meet the highest requirement

for a profession or discipline in a state where a

person is providing services. Qualifications that

are needed to provide appropriate quality and

quantity services to infants and toddlers have been

well established, and Part C decision‑makers should

ensure that these qualifications are met.

It has been well documented that early

intervention services often result in services not

having to be offered at a later time. Early

detection results in early intervention, which can

result in early discharge because of children

attaining appropriate behavior.

Myself, as an early intervention provider, I

have experienced almost 40 percent discharge of

children I have worked with because they have

progressed and demonstrated appropriate behavior.

I have achieved the success because of my

qualifications and experience.

Early intervention has been shown to be cost

effective, but only if you get results. I believe

that a less qualified professional would not get

the same results that a fully qualified individual

would. Therefore, I recommend the inclusion in

Section 303.119 of the regulations of a provision

that requires the state to adopt a policy that

includes a requirement that Part C decision‑makers

in the state take measurable steps to recruit,

hire, train, and retain highly qualified personnel

to provide special education and related services.

A similar provision was included in IDEA Part

B final regulations, and should be included in the

final regulations of Part C so that there is

consistency between the two sets of regulations.

Further, I support the inclusion of a

provision to address shortage of personnel in

303.119, an ongoing good faith effort to recruit

and hire appropriately and adequately trained

personnel to provide early intervention services,

including in a geographic area of the state where

there is a shortage of such personnel.

The other issue that I would like to address

is the definition of speech‑language pathology

services. The proposed regulations include sign

language, cued language services, and interpreting

and transliteration services for children who are

deaf and hearing impaired as a speech‑language

pathology service. These services should not be

listed exclusively as a speech‑language pathology

service because the provision of such services is a

purview of multiple professionals, including

audiologists, speech‑language pathologists,

teachers of children who are deaf and hard of

hearing, and interpreters.

Therefore, I recommend moving sign language,

cued language, auditory/oral services, and

interpreting transliteration services from the

definition of speech‑language pathology services to

a new section referred to as services for infants

and toddlers who are deaf or hard of hearing.

Interpreting and transliteration services

should also be listed under a new and separate

section referred to as interpreting and

transliteration services. Services provided to

children who are deaf or hard of hearing need to be

separated and differentiated from interpretive or

translating services. These are different types of

services, and typically are provided by different

professionals.

Thank you.

MS. DIRRIGL: Thank you.

Welcome.

MR. ROB MORGAN: Thank you. My names Rob

Morgan. I\'m the proud father of a three‑year‑old

daughter, and her name is Jillian, and Jillian was

born with Down Syndrome. I\'m also Acting Chair of

the ICC here in Indiana.

And, first, I just wish to address you as a

father of a child with a disability, and

specifically as it relates to Section 303.320(e),

which has to do with the timeliness of evaluation

and assessment. I strongly believe that this

section should be amended to retain the requirement

that the 45‑day time line for developing IFSP start

when the child is referred. The proposed

regulations changes this time line to the date

parents provide consent for the evaluation.

Now, I understand that this change may have

been made to Part C to bring it more in line with

the part B requirements, but I think it\'s just

important to note how critical timeliness is under

Part C. The duration of Part C eligibility is 36

months versus 216 months under Part B, and, quite

frankly, early intervention works because it\'s just

that; it\'s early.

My daughter, Jillian, was born on February 5,

2004\. We never heard of First Steps, which is

Indiana\'s early intervention system, but, quite

frankly, on the day she was born the clock started

ticking against that 36 months.

Jillian was a month premature. She spent

three days in the hospital. She was discharged on

Saturday. On Monday we had a visit with the

pediatrician. The clock was still ticking. Her

pediatrician gave us a phone number. She said it

was First Steps, and we should probably give them a

call.

You have to realize, at this point we\'re a

family that is overwhelmed. We are grieving, and

we\'re just coping day to day. A few days later I

asked my wife if she had made the phone call. It

hadn\'t been made. We had no idea the incredible

positive impact that First Steps is going to have

on Jillian\'s development and our ability to cope

with having a child with a disability.

I picked up the phone; I made the call.

Within days, First Steps was in our home. Within a

month we had an IFSP, and within six weeks we had

services. We were just head first into early

intervention boot camp.

On January 2 of this year, Jillian was two,

and we were looking forward to her third birthday,

which was a month later, and Jillian signed to her

mom that she was sick. It\'s a sign Jillian had

never used, but somehow she knew this sign. My

wife took her to the doctor, and she was diagnosed

with leukemia.

Speech is difficult for kids with Down

Syndrome. Jillian communicates primarily using

signs. She knows hundreds of signs. More than me.

Because of First Steps, because the state was on

the edge of their seat, when I called, they jumped

up and sprinted to my home.

Jillian can communicate. Because Jillian can

communicate, she is alive today, and her prognosis

is good.

Roll forward ten years, same circumstances,

same family. Funding of programs for people with

disability is stretched even more. I call First

Steps. Jillian\'s clock is ticking; however, the

state\'s clock does not start until my consent is

obtained. Nobody sprints to my home. There\'s just

no incentive. We lose weeks, possibly months.

Now, it\'s January 2 of this year. Jillian is

two, and we\'re planning her third birthday. Did we

get started soon enough? Can Jillian communicate

with us? Does she tell mom that she\'s sick? Does

Jillian live?

The stakes are just that high. It is so

critical that we retain the 45‑day requirement from

the date of referral. If there is one change that

we can make to these regulations, that\'s the change

that I feel needs to be made.

And I\'m going to quickly run through something

else. You\'re probably going to stop me here.

303.13(12), speech and language services, the

proposed definition of the section seems to limit

some speech‑language services to infants and

toddlers who are hearing impaired. I respectfully

request that this section be amended to remove the

sentence that contains the phrase, \"who are hearing

impaired.\"

My daughter, Jillian, is not hearing impaired;

however, her ability to use sign language saved her

life. This section needs to be changed as well.

How much time do I have?

MS. BAILEY: You\'re actually out of time.

MR. ROB MORGAN: Thank you very much.

MS. DIRRIGL: Rob, thank you for coming.

Thank you for sharing Jillian with us.

MR. ROB MORGAN: May I give you my written

comments?

MS. DIRRIGL: Yes.

MR. ROB MORGAN: Now, will my additional

written comments be put in the record, or do I need

to hand those to the court reporter?

MS. DIRRIGL: No, they\'ll be exhibits.

MR. ROB MORGAN: Thank you very much.

MS. DIRRIGL: Thank you.

Welcome.

DR. JOHN PALLADINO: Hello. My name is

Dr. John Palladino. I\'m a Professor of Special

Education at Eastern Michigan University, in

particular a researcher in the area of foster care

and its relationship to special education. I\'m

also a foster parent in the State of Michigan, and

a licensed foster parent to work with at‑risk

medically fragile infants.

I\'m here today to first of all thank the

Department of Ed for the increase of language

towards the foster care population that is apparent

in the report. I do, however, call attention to

the fact that there are several areas where \"wards

of the state\" is used and the phrase \"foster care\"

is not, and likewise sections where \"foster care\"

is used and the phrase \"ward of the state\" is not.

I further recommend that an example or a

clarifying definition of the difference between a

ward of the state and foster care is provided, so

that the average person who is unfamiliar between

the differentiation between the two terms.

I have concern about the language, however,

that is used in the definition of a parent, and in

particular, the recommendation ‑‑ I\'ll pull out the

citation here ‑‑ in Section 303.27 where the

proposed language states that the proposal would

provide that the biological or adoptive parent

would be presumed to be the parent for purposes of

the regulations. If the biological or adoptive

parent were, quote, \"attempting to act as the

parent,\" that parent would be presumed to be the

parent.

I have strong concerns about the phrasing,

\"attempting to act as a parent.\" I don\'t know what

that actually means. And in the court system,

where there are lots of battles, and there are

secondary agendas that often arise, biological

parents sometimes take advantage of the court

system to vent frustrations that could in fact

jeopardize the services provided for the child in

the time of care.

I think that\'s very vague language. It\'s open

to a lot of misinterpretations, and it will in fact

put the children at risk receiving those services.

And I will just dovetail with that, that the

language about a surrogate parent, whether or not

the foster parent is or is not the surrogate parent

is likewise very confusing. The clarifications in

those sections need greater attention at this time.

I would recommend that the language used in

the child finding section in regards to seeking out

foster care agencies would also include the

juvenile court system. That\'s where these children

are legally identified and supervised. And the

section in regards to using evidence based

interventions to work with all of early childhood

population, to include trauma based interventions

as well for those children who are victims of child

abuse and neglect.

Thank you.

MS. DIRRIGL: Thank you, John.

MR. BUTTON: We have a new 4. What number

were you?

MS. DEBBIE CHEATHAM: No. 19.

MR. BUTTON: Okay, No. 19.

MS. DIRRIGL: Hi. Could you please state your

name.

MS. DEBBIE CHEATHAM: Good afternoon. My name

is Debbie Cheatham. I\'m the Part C coordinator for

Ohio. I am here representing the board of the

Infant Toddler Coordinators Association.

On behalf of the IDEA Infant Toddler

Coordinators Association, thank you for the

opportunity to come to this public hearing on the

draft Part C regulations. ITCA currently has 47

state and territorial members, and represents Part

C lead agencies that are responsible for

implementing Part C early intervention systems

across the country and in other eligible

jurisdictions.

As these public meetings are occurring within

several weeks of the release of the NPRM, ITCA will

be making preliminary comments at this hearing. It

is the intent of ITCA to provide extensive written

comments prior to the July 23, 2007, close of the

comment period. We are currently working with our

members to carefully analyze these proposed

regulations, and to develop additional positions

and recommendations.

We have completed one conference call for ITCA

members, ICC Chairs, and board members from the

Early Intervention Family Alliance that provided an

overview of the proposed changes. ITCA is also

conducting topical conference calls for the member

states and territories to address issues such as

finance, procedural safeguards, evaluation

assessment, and IFSP services. We are working

closely with our state members to consider the

potential impact of these draft regulations, and to

make recommendations on the entire package.

It is important to note that the numerous

changes being proposed will have significant

resource implications with Part C systems. These

changes will require review and revisions of

policies and procedures, additional statewide

training, as well as changes in monitoring and

general supervision systems. While some changes

being proposed are the result of statutory

revisions made in 1997 and 2004, many of these

changes are not.

We note that IDEA 2004 states that the

secretary shall issue regulations under this title

only to the extent that such regulations are

necessary to ensure that there is compliance with

the specific requirements of this title, Section

607(a).

In the course of our analysis, we are trying

to balance the resource cost of these changes with

their potential impact on child and family

outcomes. ITCA supports the changes that will

positively impact young children and their

families.

States and territories face challenges to meet

the increasing administrative and statutory

requirements of Part C. These increased

requirements create an enormous burden on states

and territories who are struggling to identify

sufficient resources to support the administrative

and direct service requirements of this system.

This is occurring at the same time that the

president\'s budget request for \'08 recommends a

\$13 million cut in federal funding for Part C.

I would like to thank you for conducting these

meetings on the proposed Part C regulations. As

you know, there continues to be annual major

increases in the number of children and family

served under Part C. In 1996, states served

188,926 children. In 2005, the number of children

served was 293,816. These numbers reflect a 55

percent increase in the number of children served.

ITCA and its member states and territories

remain committed to ensuring comprehensive quality

services for these infants and toddlers with

disabilities and their families in partnership with

our federal partners.

Please contact us if we can be of any

assistance as this NPRM package moves forward.

MS. DIRRIGL: Thank you. Thanks for coming

from Ohio.

Hi. Welcome.

MS. NANCY PEELER: Hi. My name is Nancy

Peeler. I live in Midland, Michigan, and I am a

parent of two children who have been enrolled in

Part C, one in Massachusetts, one in Michigan.

I\'m here today representing the Early

Intervention Family Alliance, which is a new

organization of parents that are trying to increase

the Part C parent voice in the policy. And this is

a perfect example of what we\'re trying to do. I

have some written testimony for you, and I also

have a number of points I\'d like to cover.

The first one is at 303.320(e(1), and that is

the 45‑day time line. I think that there are some

inherent differences between Part B and Part C, and

I am opposed to changing those Part C rules. I

think that the time line should continue to start

with referral. I think that this would create

accountability to the family, and it helps to make

certain that the services start soon, which is the

purpose of Part C.

We are talking about very young children. And

the earlier the involvement, the greater the

impact. We think that having an undefined period

of time prior to starting services does not benefit

the children or the families.

With our first early intervention referral, we

had no idea what to expect. This was all new to

us. Our physician had not been helpful to us, and

we had to seek out an early intervention program on

our own. Fortunately, they were very responsive to

us. But we didn\'t know anything about time lines

or anything about paperwork or what we could

expect.

With the proposed changes, parents will no

longer be able to expect the timely response

because the system proposes to eliminate the

safeguards that put that timely response in place

to get that system started up. The system needs

safeguards in place to create accountability,

especially at the beginning with families who are

just beginning to learn about their rights, and

what they can expect, and how they can work with

the program to help their children. So, please,

retain the original language in the beginning of

the 45‑day time line at referral.

I would also propose that the 618 data system

be expanded to require collection of data to

document any delays relating to that 45‑day time

line, especially exceptional circumstances.

The second point is at 303.320(c), which is

the family assessment. The family assessment in

this case refers to a voluntary assessment with the

family to identify and address the resources,

priorities, and concerns that will lead to improved

and functional outcomes. We encourage the

department to use the term \"family‑directed

assessment\" throughout the regulations. We\'d like

to note this assessment should be something that is

done with a family and not to a family. And it

should not be considered a diagnostic procedure;

rather, it\'s to assist the family to identify their

priorities and what to work on with early

intervention.

For our family interview, it helped us to

pinpoint the things that we needed to deal with the

most, which were namely helping our daughter to

have the means to deal with her speech delay, to

indicate who she wanted, and when she wanted things

to start and stop other than behavior like crying

and throwing herself to the ground. So, that was

very important to us, and it was helpful that the

interview focused on what we needed to happen.

We would like to support the inclusion of the

language, we support the inclusion of the language

\"as determined not just through the use of an

assessment tool, but through a voluntary personal

interview with the family\" because we consider that

a very positive addition to this.

The third point I\'d like to address is

proposed 303.601(a)(1)(iii). This is the section

about the State Interagency Coordinating Council.

There is a new provision about which parents can be

on the Interagency Coordinating Council, and we

would suggest that that be removed. We think it\'s

counterproductive to pit families against families

and imply that some families and some experience is

more valuable than others. Being enrolled in early

intervention is akin to taking college courses and

earning a degree. The learning curve is pretty

steep to figure out how this all works, and

involves a significant commitment of time and

energy for parents; not just investing in their

children, which, of course, they do, but to figure

out how the system works.

And it should be no surprise that many parents

would choose to use that information to try to

impact the system, and take that knowledge and

skills they gain as a result of being involved in

early intervention. Why, then, should some be

penalized, or told that their contribution isn\'t

valued and isn\'t welcomed at the SICC?

We would like to suggest as an alternative

that you consider a rule that asks for diversity of

perspectives, to make sure that you have

perspectives of parents who work within the system,

who work outside the system, and don\'t work with

the system at all; so that you really have a lot of

different parent perspectives bringing to bear in

the SICC and in the process of working on Part C.

Thank you.

MS. DIRRIGL: Thanks for coming up here.

Hi.

MS. CHRIS MAHNESMITH: My name is Chris

Mahnesmith. I\'m the president of the Indiana

Occupational Therapy Association, and I am also a

provider of early intervention services in

northwest Indiana.

I\'m very happy to be here today, and I\'m very

happy you have decided to hold these hearings.

Occupational therapists and occupational

therapy assistants use purposeful activities to

help seek and prevent developmental delays for

children. We want to improve their functional

skill through play and learning and their daily

living activities. We are part of the

multidisciplinary team that includes the family.

OT may be required for infants and toddlers

that have premature birth or low birth weight,

congenital or genetic disorders. They could have a

neurologic insult that occurred before, during, or

after birth, delays in sensory motor skills, poor

behavior state regulation and neuromuscular

diseases. Occupational therapy may also be

required for infants and toddlers with an

adolescent mother, a mother with a history of

substance abuse, a family living in extreme

poverty, or parents with a developmental disability

themselves.

Occupational therapy does benefit infants and

toddlers at risk for developmental delay by doing

several things. We help to improve the child\'s

ability to respond and interact with objects in

their environment like a ball. We support the

parents in their role as caregivers. We recommend

adaptive methods for feeding, using a nosy cup, for

dressing, and for play. We engage the child in

different activities to improve their motor schools

and their play skills, learning to use little

pinchers, for example. And we provide appropriate

sensation to facilitate movement of desired

behaviors, such as reaching and grasping.

Now that you\'ve heard a little bit about

occupational therapy, I want to share some comments

from the American Occupational Therapy Association,

or AOTA, and the Indiana OT Association. We feel

that new Part C regulations are needed to help

guide our states in how we develop and implement

comprehensive program assistance in early

intervention. We are concerned about unlicensed

personnel being used by states to provide the

multidisciplinary early intervention services

without necessary education or experience. And

while it\'s clear that OT is identified as an early

intervention service, we feel that additional

federal guidance should be added to ensure that

states are establishing personal qualifications

consistent with the standards laid out in Part B of

IDEA, governing school‑base practice and consistent

with our state practice and licensure statutes and

regulations.

Federal regulations should clarify that

occupational therapy can only be provided by

qualified occupational therapists, or occupational

therapy assistants, working under the direct

supervision of an occupational therapist. And this

change should be extended similarly to protect the

scope of practice of other related services. This

would align the federal regulations with state

practice acts and licensure laws designed to ensure

quality healthcare personnel.

Now I\'d like to specifically address three

sections. In order to promote improved

consistencies between the states, Section 303.21

should be strengthened to make it clear that the

federal definition of infants and toddlers with a

disability does not require that the disability be

severe or chronic. And we want to enforce the fact

that the regulation involve coverage for at‑risk

infants and toddlers.

As we all know, early intervention services

are most effective before the delay reaches a

chronic or persistent state, and the federal

guidelines should be consistent with purposes and

strengths of early intervention.

Therapy provided in the natural environment is

the utmost ideal situation that we want to have

with all the kids. But we believe that Section

303.26 and the related Section 303.126 should be

clarified to specifically state that service

provisions in the clinics or hospitals could be

done, if that\'s a better place than the home, or

it\'s not possible to do it in the home. We expect

that this would be rare, not the norm.

And finally, item No. 3, we believe that the

definition of occupational therapy should be

amended at Section 303.136 to specifically clarify,

as stated in the Part B definition, that

occupational therapy means service provided by a

qualified occupational therapist. And we\'re

satisfied with the current definition and scope of

occupational therapy defined in Part C proposed

regulations, but we believe it\'s critical to

confirm and affirm that occupational therapy is

only occupational therapy when it\'s provided by a

qualified occupational therapist.

I want to thank you for allowing me to take

some time to talk with you today.

MS. DIRRIGL: Thank you, Chris.

Hi. Welcome.

MR. JEFF HUFFMAN: Good evening. My name is

Jeff Huffman, and I\'m with the Indiana Down

Syndrome Center for Public Policy and Parenthood,

an organization here in Indiana, but I\'m also here

today as the father of an awesome six‑year‑old son

who happens to have Down Syndrome.

My wife, Jan, and I were excited beyond our

dreams the day our son was born. It was only a

short time later that we were told that Nash had

Down Syndrome. I can assure you that we were

totally shocked and surprised, and totally

uneducated on what lie ahead for us.

Today, Nash has just graduated from

kindergarten, and is preparing to be a proud

first‑grader at the beginning of the next school

year. Many of the accomplishments that Nash has

made are due to the success of Nash and his team,

made up of family, friends, therapists and

teachers.

Thankfully, due to the IDEA Part C, in Indiana

there was a wonderful program called First Steps

that we were able to access. With the help of our

service coordinator and those within the Indiana

Down Syndrome Foundation, we were able to pinpoint

the therapists inside a confusing system to get

Nash the physical therapy, occupational therapy,

speech therapy, and developmental therapy he would

need to be able to start working on the many delays

in development that he might experience.

Nash was able to make great strides in his

fine and gross motor skills with the wonderful

therapists we work with. But the two places that I

feel really made the most significant progress were

his speech and developmental therapy.

We had to show proof to First Steps

administration that our chosen speech therapist,

who offered services outside our home, was the best

alternative for Nash. She had sign language

instruction, 20 years of experience teaching speech

therapy to children with Down Syndrome, and also a

therapy environment to create the least distraction

for our son, which he needed.

As her office wasn\'t deemed a natural

environment, we had to fight to obtain First Steps

services for our son under her guidance. After we

presented our case, we were able to proceed with

her as a therapist for our son. But how many

didn\'t get the benefits of speech therapists with

sign language experience because they didn\'t know

they could show this was the best thing for their

child and subsequently lost out?

At the time that my son\'s services began, the

First Steps early intervention program was one of

the best in the country. I\'m sad to say that is

not the case today. Many changes have been

implemented over the last four to five years, like

eligibility determination teams, consolidation of

service coordination, and new eligibility levels.

All of these changed under the headline of \"Quality

Improvement.\"

With child provider numbers down statewide,

the loss of quality service coordinators and

therapists, family follow‑ups running behind or not

happening at all, currently I am positive quality

improvement should be replaced with cost reduction.

These changes will catch up with Indiana, and the

expense will fall in the school corporations when

these children show up at the door, having not

received Part C services.

Our request today is to amend the speech‑

language pathology services paragraph of the early

intervention services definition in Section 303.13,

early intervention services, paragraph 12,

subsection (iv), speech‑language pathology

services, of the proposed regulation to clarify

that infants and toddlers who are not hearing

impaired but need sign language and other related

communication strategies, to receive services to

support those strategies.

The proposed regulation appears to limit the

provision of sign language, cued language, and

auditory/oral language services to those infants

and toddlers who are hearing impaired. Many

infants and toddlers with Down Syndrome and other

disabilities use this communication strategy, even

if they are not hearing impaired. These children

and their families should be able to receive any of

the services listed in this provision if they are

appropriate for the child.

I\'ve listed some data and studies to back that

up in here, which I\'ll leave in my written

testimony. It almost seems archaic to be arguing

for the benefits of sign language for those other

than the hearing impaired, yet the proposed

regulation suggests that speech‑language pathology

services under Part C for the provision of sign

language, cued language, and auditory aural

language services only be for those that are

hearing impaired.

We know how much sign language benefited our

child during First Steps, from his first \"hello\"

sign to his first \"I love you.\" Without sign

language, his mom would never have heard \"Happy

Mother\'s Day\" when he was still in First Steps. We

never could have increased his vocabulary to 350

words at age three mostly by signs.

We used sign, for instance, with reading,

articulation, and continued to ease the frustration

of lesser communications at age two through four

years of age to those of his typical peer group.

Please, eliminate the words, \"as used with

respect to infants and toddlers with disabilities

who are hearing impaired,\" from proposed Rule

303.13(b), Section 12, subparagraph (iv), so that

all Part C children can receive the necessary

communication tools to allow them to communicate

effectively, and relieve frustration to family,

friends, and most importantly for those children

individually.

Thank you.

MS. DIRRIGL: Thank you. Thank you for

sharing a picture of Nash. He\'s a cute boy.

Hi. Welcome.

MS. KIRSTEN HAMMOCK: Good afternoon. My name

is Kirsten Hammock. I\'m a Part C coordinator for

the State of Kentucky. I\'m also a member of the

Infant & Toddler Coordinators Association, and I\'m

pleased to present the following preliminary

statements.

ITCA appreciates and supports the

incorporation of relevant Part B provisions ‑‑ for

example, monitoring, confidentiality, et cetera ‑‑

into the Part C regulations instead of having these

incorporated by reference, as we requested in our

letter to the department in March, 2005. This

creates a comprehensive set of federal IDEA

requirements for Part C.

ITCA also appreciates the use of terminology

consistent with early intervention in these newly

incorporated provisions under Part C.

ITCA supports the inclusion of the state lead

agency option to provide written prior notice to

parents, allowing them to decline referral to the

local school system as their child approaches age

3\. This is consistent with the long‑standing OSEP

position as contained in policy letters on this

matter.

ITCA will be providing written comments on the

proposed changes to definitions of early

intervention services and IFSP changes after

ongoing discussions with members.

In our letter submitted in March, 2005, ITCA

requested the addition of a state option to

establish and implement screening policies and

procedures. We appreciate this addition, but will

be providing additional written comments on

specific aspects of the proposed screening

regulations.

In our March, 2005, letter, ITCA also

recommended that regulatory language, related to a

state\'s developmental delay definition, retain

state flexibility to determine rigorous, since the

statute maintains the state\'s authority and

responsibility to set eligibility criteria. We

support the regulatory language proposed in this

area.

ITCA will also be providing written comment on

the proposed changes related to evaluation and

assessment. We note that these are significant

changes that do not appear to have a statutory

origin. State systems have used the current

definitions of evaluation and assessment for about

20 years. Changing them at this point has major

implications and, therefore, significant discussion

is necessary in order to determine whether or not

these changes will be beneficial to infants,

toddlers, and their families.

ITCA generally supports the proposed

regulatory language related to natural

environments.

ITCA opposes the deletion of 303.4. This

provision allows states to follow Part B and not

Part C regulations with children who transition

from preschool special education before their third

birthday. This regulation is consistent with IDEA

Section 619(a)(2) and (h), long‑standing provisions

in the statute. This provision is necessary as an

important component of many state transition

systems as part of assuring a seamless transition

for children and families from Part C to preschool

special education.

ITCA generally supports the provision in

303.211(a)(2) and 303.501(d) that allows states to

serve a subset of children under the three to

kindergarten option, but there are major issues

that remain to be clarified. We will be conducting

a call for members to discuss this issue, and will

address this in our written comments.

Because of the serious implications of the

proposed changes, ITCA will be conducting a topical

call with members regarding the proposed

regulations related to the two‑day referral and

45‑day time line and will be commenting on these in

writing.

ITCA has significant concerns regarding the

proposed change in 303.24 regarding the definition

of multidisciplinary. Permitting one individual to

represent a multidisciplinary perspective is not

consistent with recommended practice.

ITCA supports the proposed change in 303.33(c)

to allow the use of the term, case management.

Thank you very much.

MS. DIRRIGL: Thank you.

Welcome.

MS. RYLIN RODGERS: Hi. My name is Rylin

Rodgers, and I\'m the mother of two children,

Matthew, who\'s now ten, and Laura, who\'s seven.

They were both served in Indiana\'s early

intervention system, First Steps.

Our family illustrates the critical importance

of an effective early intervention program in the

lives of families who are raising children with

disabilities. First Steps not only provided

critical early intervention services for Matthew

and Laura, laying the foundation for the best

possible outcomes for them, but First Steps also

provided a structure for parent/professional

partnerships that allowed my husband and I to learn

not only how to best support our children, but how

to create, build, and navigate partnership systems

that remain an integral part of our lives.

Today, I wanted to comment on a few of the

proposed regulations. First, 303.33(a)(2), service

coordination. I am concerned about the shift in

language for service coordination to help families

obtain services to a language that allows for

families to access, gaining access to services.

I\'m concerned that gaining access may be

misinterpreted to allow for the providing of lists

of numbers for families to call, brochures, or

other information for families to follow up on.

It is critical when families start the early

intervention process and are dealing with the high

waves of emotions and new learning that comes from

parenting a child with disability, they are

supported in managing and navigating the systems in

which they are now entering.

Secondly, I would like to comment on

303.434(d), filing of complaints. I am concerned

that the additional requirement that a family send

a copy of the complaint to the person that they are

complaining about or that person\'s employer creates

an undue burden for the family to navigate a system

where they have to find that person, who that

person works for, the address, and the contact

information. That burden should belong to the

state and not to the family.

Families involved in early intervention rarely

file complaints. They are in the midst of learning

a new system. Creating an extra step which they

would have to follow in order to access the

complaint process is unnecessary.

Next, I would like to talk about and applaud

the addition of language to support positive

efforts to employ and advance qualified individuals

with disability. However, I would like to

encourage you to consider adding language to that

section that supports the employment of families

who are parenting children with disability.

Families that have been through the early

intervention process have a unique set of

experiences and expertise that can only strengthen

the system.

Finally, I would like to comment on

303.320(e), evaluation and assessment of the child

and the time line. We have two children. Our

first child did not enter First Steps until he was

18 months old. Our second child, when she was born

with the same diagnosis, myocardiomyopathy, entered

First Steps when she came home from the hospital.

I deal on a day‑to‑day basis with a living,

breathing example of the difference in delay of

early intervention makes.

Matthew didn\'t walk, didn\'t speak, and didn\'t

interact until early intervention was complete.

Laura was able to meet all of those milestones

before her third birthday.

It\'s critical that families are not burdened

by knowing that they must access and start that

time line by providing written information that

they are giving consent for evaluation. That time

line needs to start when that first call when they

are inquiring about early intervention.

Thank you for the opportunity to share my

thoughts.

MS. DIRRIGL: Thank you.

Hi.

MS. MARY JO GERMANI: Hi. I\'m Mary Jo

Germani. I am a speech‑language pathologist. I am

currently the chairperson at Ball State University

for the Speech Pathology and Audiology Department,

and in my free time I\'m also the president of the

Indiana Speech‑Language‑Hearing Association.

I have three points to talk about, and I\'m

going to be under five minutes. The first one is

on personnel standards. I would speak in favor of

including the same language as was put in Part B,

final regs, that discusses measurable steps to

recruit, hire, train, and retain qualified

personnel. I\'d also like to see language included

that would provide some guidance on implementing

and utilizing paraprofessionals. And these

guidelines could then allow states to have some

consistencies in how these paraprofessionals are

currently utilized.

The second area is under the definition of

speech‑language pathology services, and that

relates to some of the topics that were already

brought up with the fact that sign language, cued

language, and interpreting services are provided by

professionals other than speech‑language

pathologists. So that definition needs to be

expanded to include audiologists, teachers of

hearing impaired, and others who would also be

qualified to work in that area.

My last area is on the team models. In the

current regulations, the term, multidisciplinary,

is used as the one team model. And currently we

know, based on best practices, that there are

several models available, and that you would like

to see that the model chosen is based on the

toddler\'s needs and not some set definition in the

regs.

MS. DIRRIGL: Thanks, Mary Jo.

MS. MARY JO GERMANI: Thank you for being

here.

MS. DIRRIGL: Hi. Welcome.

MS. JUDY HANCOCK: Thank you for giving us the

opportunity to speak in Indianapolis. My name is

Judy Hancock. I\'m an incorporated self‑employed

occupational therapist, providing early

intervention services here in Indiana in our First

Steps system. As a provider working in the field,

I fully support and have seen the difference that

early intervention can make with the progress of

children, the infants, toddlers, and families in

their world and in their family\'s world. Indiana,

I\'d like to go ahead and give them a plug. I think

they have an excellent system compared with other

states.

My comments will be my own, though I also wear

other hats as a stakeholder. I\'m the Indiana

Occupational Therapy Special Interception Chair,

and I also tend to be the liaison for the

Independent Provider Association here in this

state, but these comments are mine. If you don\'t

mind, I\'m going to not mention the numbers because

it ends up being soup for me.

Procedures for an assessment. I appreciate

that the regulations establish that informed

clinical opinion by qualified personnel is still

included in establishing the child\'s eligibility,

even when other instruments do not. No test has

been designed that captures all the subtleties

that an experienced, trained provider can identify,

so I hope that informed clinical opinion still

continues to be left in the regs in future proposed

changes.

On time lines, Indiana has proven that it is

possible to meet the 45‑day time line from initial

contact. Changing that time line to when the

parent consents to conducting evaluation is

language that leaves that time line open. Infants

and toddlers change very fast, and 45 days can be a

lifetime.

If you must change that to accommodate those

states or agencies that have not been able to

follow that 45‑day time line, then I would request

that you at least give a definite, still give a

definite number of days, as opposed to leaving it

open, such as increasing it to 50 days instead of

45 days.

For us, with the 45‑day time line, it\'s still

a minimum of two weeks after that before services

start, so it could be like two months after a child

leaves the hospital before a child even begins the

services. So, to me, 45 days is definitely

important.

Under other services, the other category of

services is considered neither required nor funded

under Part C. And as a provider, I feel that

dietitians are an important part of some of the

work that I do sometimes. Weight gain is vital for

development of brain and growth, and as a provider

who works with failure to thrive and G‑tubes and

feeding issues, sometimes having a dietitian to

work with us is invaluable to the progress of that

weight gain and elimination of the G‑tube. And

that does impact their early development.

Content on an IFSP, the service coordinator is

responsible for implementation of early

intervention services identified in an IFSP. This

means if the service is not identified, then the

service coordinator is not responsible. So I would

request that language be included that the service

coordinator and the team identify all services on

the IFSP that are needed, regardless of whether the

service is available or not. That way the service

coordinator would continue to make effort to get

those services for the family.

Again, on service coordination services,

families need assistance in obtaining the services

identified. Obtaining services fulfills the

contractual obligation of the IFSP. Parents do not

benefit by identifying what is possible for them,

and then only help them gain access versus actually

obtaining those services.

On personnel development, language including

personnel development of paraprofessionals is

concerning because it doesn\'t describe the intent

of using the paraprofessional. Occupational and

physical therapy assistants provide direct

intervention and are accountable to their

profession through supervision by law. I don\'t

know of any similar accountability for using a

paraprofessional for direct intervention.

Professional therapists already have an

ongoing debate whether or not an entry level

therapist should be able to directly work with

children, families in the natural environment,

because the natural environment doesn\'t allow for

site availability of other professionals to seek

guidance from. That debate encourages that this

highly trained qualified professional needs to be

mentored, and what that would look like when they

are alone out in the field.

Adding the usage of a paraprofessional to

afford direct service in a natural environment to

the debate is even a further step away from

children and families benefitting from highly

qualified personnel at a critical time in their

lives. Thank you.

MS. DIRRIGL: Thank you.

MR. BUTTON: We\'re going to take about a five,

six minute break now, give everybody an opportunity

to rest, and then we\'ll be back. So, those of you

that still have to provide comments, if you would

meet me back up here again, we\'d appreciate it, and

we\'ll get started in about five minutes.

MS. DIRRIGL: Hi, Ashley. Welcome.

MS. ASHLEY VANDEGRIFT: My name is Ashley

Vandegrift. I am a representative for the

Pediatric Section of the American Physical Therapy

Association. As I said, I\'m here on behalf of the

APTA Section of Pediatrics, and I would like to

thank you for the opportunity to present our

recommendations concerning the development of the

IDEA Part C regulation.

APTA is a professional organization,

representing the interests of nearly 69,000

physical therapists, physical therapist assistants

and students of physical therapy. The Section of

Pediatrics has followed the reauthorization of IDEA

and the development of regulations very closely.

Physical therapists provide evaluation and early

intervention services for infants, toddlers, and

their families to enhance development, help reduce

potential disabling conditions, and empower

families to promote their children\'s health and

development.

Physical therapy services fall within the

definition of early intervention services under

Part C. We, therefore, have a strong interest in

the development of these regulations, and are

grateful for the opportunity to speak today at this

meeting.

The Pediatric Section is in support of several

of the provisions of IDEA Part C. APTA is fully

supportive of the natural environment language

found in the proposed regulations. For children of

all ages, interventions provided in the natural

environment are the most effective means of service

delivery.

We also applaud the revised and strengthened

language with respect to clinical opinions found in

proposed Section 303.111 to safeguard children from

ineligibility determinations based solely on test

scores or isolated information. Informed clinical

opinions are important because some variant

infants, who are referred for early intervention,

do not always meet criteria for eligibility based

on standardized test scores.

For example, in the State of Connecticut, the

Patel Development Inventory II is used for

screening. A four‑month‑old, with some head

control and supported sitting, who lifts his or her

head up while on their stomach, will not meet

criteria for services, even though that infant

presents with significant qualitative concerns in

muscle tone and posturing. Informed clinical

opinion is therefore critical, given that screening

tools do not always correctly identify the variant

infant.

APTA is also very supportive of the personnel

standards that are currently written in Section

303.119. These provisions will ensure that safe

and appropriate interventions are being provided

for infants, toddlers, and preschool children.

The Pediatric Section also expresses some

concerns about the provisions for IDEA Part C.

Proposed 303.31 and 303.6 define child, an infant

or toddler with a disability, and make clear that

part 303 applies to infants and toddlers who are

under three years of age, and, therefore, do not

apply to children with disabilities ages three and

older, who may be entitled to receive a free and

appropriate public education under Part B. APTA is

concerned with this provision as currently written

in that some children would not be able to receive

services during the summer months as they

transition from Part C to Part B services,

interfering with seamless transition plans. We

would request that this issue be addressed in the

final regulations.

Although respite care is specifically

discussed in the preamble of the proposed

regulations as being included as an early

intervention service, if the individualized family

service plan team identifies it as being necessary,

that has been deleted from the list of services in

the proposed regulation test. APTA is concerned

that the deletion of respite care could be used as

a basis for denial of these services, although the

proposed regulations clearly state that nothing in

the regulatory language prohibits identification of

the IFSP of a service not specifically listed.

Respite care is an important service for families

of a child who has significant developmental

disabilities; therefore, we respectfully request

that respite care be returned to the list of early

intervention in the Part C final regulations.

Although the requirements for use of native

language, found in proposed Section 303.25, will

now be consistent with those found in the IDEA Part

B regulations, requiring the language or mode of

communication normally used by the child, utilizing

all direct contact with the child, we ask that the

agency be sensitive to the burden that this may

place on providers of early intervention services.

APTA respectfully requests that technical

assistance be provided by the agency to serve as

guidance in meeting this requirement in rural areas

or areas that suffer from shortages of personnel to

provide early intervention services.

In closing, physical therapy services promote

the health and development of infants and toddlers

at risk for or with developmental delays and

disabilities. Physical therapy also enables

preschool students with disabilities to maximize

their functioning in the school setting so they can

get the most out of their educational

opportunities. We would ask that the regulations

for Part C of IDEA 2004 fully reflect the central

role of early intervention for children served

under Part C of IDEA.

Thank you for the opportunity to present our

comments.

MS. DIRRIGL: Thank you.

Hi.

MS. DARLA GUNDLER: Hi. Thank you for the

opportunity to comment on IDEA Part C regulations.

For the record, my name is Darla Gundler. I\'m from

North Adams, Massachusetts. I\'m the parent of a

daughter, born prematurely, with a bilateral

profound hearing loss. I\'m also the Director of

the Early Intervention Parent Leadership Project of

the Massachusetts Department of Public Health, and

a past parent representative on the Massachusetts

Interagency Coordinators Council, and a founding

member of the Early Intervention Family Alliance.

I\'m here today to testify representing the

Early Intervention Family Alliance. The EI Family

Alliance is a national group of family leaders

dedicated to quality outcomes for infants and

toddlers with disabilities and their families.

The EI Family Alliance works to assure

meaningful family involvement in the development of

IDEA Part C policies and their implementation at an

individual, community, state, and federal level.

The EI Family Alliance would like to recognize

the importance in the proposed regulations to

encourage states to focus on at‑risk infants and

toddlers getting early intervention. We feel that

this is critical, even though funding through IDEA

Part C is not available to implement this new

initiative. We do recognize how important

interventions are to infants and toddlers and their

families.

The intent of IDEA Part C is different than

IDEA Part B. And while there is a need for

alignment with procedural safeguards in transition,

it is important to point out some distinctions need

to be made.

For example, in the original authorization of

Public Law 99457, it states the Part C system was

to develop and implement a statewide comprehensive

coordinated multidisciplinary interagency program

for early intervention services for handicapped

infants and toddlers and their families. While we

are submitting more comprehensive comments which we

believe are critical on behalf of families with

infants and toddlers with disabilities, the EI

Family Alliance offers the following priority

comments regarding regulations that will directly

impact the very nature and base of the program from

a family perspective:

The commencement of 45‑day time line, which is

regulation 303.320. States have made significant

progress in meeting the 45‑day time line for

evaluation and assessment of infants and toddlers.

We are aware that the Part B time line begins at

the point of consent. However, we believe that

there are inherent differences between that Part B

time line and Part C.

When families begin to notice that their

infant or toddler may have delays, it may take some

time for them to identify the correct avenue to

access early intervention services. It is,

therefore, important that Part C agencies feel the

urgency to begin the process by obtaining consent

to evaluate. We are concerned that by adding an

undefined period of time in front of the time line

would delay services and decrease accountability.

Also, around family directed assessment, which

was deleted in both 303.320 and 303.113, the EI

family Alliance recognizes the importance of a

family‑directed assessment. This voluntary

assessment, which assists families in identifying

and addressing their resources, priorities, and

concerns, can result in an improved and functional

outcomes.

The EI Family Alliance would encourage the

department to use the term, family‑directed

assessment consistently. We would encourage the

department to include the reference to include,

member of the extended family as invited by the

parent or parents, in the regulation.

EI Family Alliance supports the inclusion of

the language, as determined not just by use of

assessment tool but through voluntary personal

interview with the family, as a positive aspect of

the family‑directed assessment portion of the draft

regulations.

One additional concern is the use of people

first language consistently throughout the

regulations. For example, on page 26,459 in

proposed 303.13(c)(11), it talks about references

to full range of options for families with deaf or

hard of hearing children. That, we would prefer to

read, \"children who are deaf or hard of hearing,\"

so we are talking about the child first and the

disability second.

I\'d like to thank you for the opportunity, and

on behalf of my daughter and other families I know

firsthand the importance of a family‑centered

system within the early intervention program and

how it assists families in taking an active role as

a crucial member in developing an individualized

family service plan.

I would like to say early intervention is the

most important foundation that an infant or toddler

with disabilities can have to reach their full

potential and be successful to lead productive

lives.

I continue to do this work because of my

family\'s experience and to improve the system for

other families. Please keep this in mind when

finalizing these proposed regulations.

Attached to my written comments is a

side‑by‑side comparison of proposed IDEA 2004

regulations developed by the Early Intervention

Family Alliance.

MS. DIRRIGL: Thank you, Darla.

Welcome.

MS. SAMANTHA MCGUIRE: Hi. My name is

Samantha McGuire. I\'m from Martinsville, Indiana.

I\'m a parent of a daughter, Clare, now five years

old, with Rett Syndrome. This is her picture at

age three, upon exiting the First Steps program and

entering preschool.

I\'m a graduate of the Partners in Policy

Making Program, and I\'m a regional representative

for the International Rett Syndrome Association.

Rett Syndrome is a neurological disorder that

affects almost exclusively girls. The hallmark of

this syndrome is a compulsive hand clasping that

significantly limits hand use. Other features

include apraxia, which means her brain is telling

her body to carry out motor functions, but they

won\'t respond. She has seizures and irregular

breathing.

In Rett Syndrome, early childhood development

appears normal. But between six to eighteen months

of age, there is a delay or a regression in

development. My daughter was referred to First

Steps shortly after her first birthday in March of

2003\. Through First Steps, Clare received several

services ‑‑ physical therapy, occupational therapy,

speech therapy, developmental therapy, and she saw

a nutritionist.

At that time she had significantly low muscle

tone, which affected not only her gross motor

skills, but also her ability to eat. Maintaining

adequate nutrition and fluid intake for Clare was a

daily struggle.

Don\'t be fooled by her chubby cheeks. They

are no accident. We would spend upwards of four

hours a day trying to get adequate fluids and

nutrition to Clare. The help that we received from

the First Steps nutritionist and the speech

therapist was invaluable in tracking Clare\'s growth

and in giving us new feeding methods to try.

Many of the methods of feeding Clare,

suggested to us by her First Steps providers, we

still use today. For example, we use a honey bear

bottle with a straw and squeeze fluids into her

mouth because she has difficulty sucking from a

straw. Hence, I am earnestly concerned that the

nutritional and nursing services have been removed

from the early intervention program regulations.

Removing these services from Section 303.13 may

limit families\' access to the expertise that they

need in order to maintain the health of their

children.

I understand the hardship of not having a

needed nutritionist, and what it may pose on a

family. After several months of working with my

daughter, Clare\'s nutritionist informed me that she

would no longer be serving our area, and she had no

replacement. When I learned that the county would

no longer have a First Steps nutritionist, I was

worried not only for myself and my daughter, but

for the many families I knew that would be without

guidance for their children\'s dietary needs.

At each home visit, the nutritionist would

weigh Clare and measure her length and her head

circumference to track her growth. Without the

nutritionist services, I had to take my daughter to

our doctor\'s office to obtain these measurements.

When Clare was an infant, I was permitted to stop

by the doctor\'s office at any time and have her

weighed without charge; however, by this time the

doctor had changed his policy, and the weight check

now required an appointment since the nurses had to

pull Clare\'s medical chart to record the

measurements. So a service critical to monitoring

my daughter\'s growth, once provided to me in my

home, now cost me the charge and inconvenience of

taking Clare for a regular doctor visit.

Fortunately, my family could afford these

additional doctor\'s bills, but I\'m sure other

families would have to remain uncertain about

whether or not their child was growing

appropriately.

Of course, monitoring growth is not as

important as fostering growth, and having the

information needed to address the nutritional needs

of their children is critical to families.

In the Rett Syndrome Handbook, Marilyn Rice

Asaro, a registered dietitian, states, \"Nutrition

represents one of the most important aspects of

treatment in Rett Syndrome. It is the cornerstone

by which all other forms of therapy are made

possible.\"

If nutrition has this level of importance for

a child served by an early intervention program, an

expert resource in this area should be available.

Please maintain nutritional and nursing services in

the list of early intervention services so that

families and provider teams would be aware of these

resources and can use them as needed.

Thank you for the opportunity to voice my

thoughts in this matter, and please feel free to

contact me.

MS. DIRRIGL: Thank you. And thanks for

sharing Clare with us.

Hi. Welcome.

MS. NANETTE WHIGHTSEL: Thank you. My name is

Nanette Whightsel, and I\'m the parent of a

42‑year‑old young lady, and I speak to history.

Before First Steps or any programs were

available, my 42‑year‑old daughter received

nothing. We lived in Indianapolis, which was a

large community, and she had profound epileptic

seizures. She is profoundly developmentally

delayed, and she\'s hyperactive ‑‑ a marvelous

combination.

We were told by our large children\'s hospital

by the time she was five that they had used all the

medication available to control her seizures, and

it simply wasn\'t going to happen. We were told by

the large rehabilitation center in Indianapolis

that they weren\'t going to rehabilitate her in any

way, so we might as well take her home, as she was

disruptive.

Forty‑two years ago, or 35 years ago when we

had zero services for our children in Indiana, my

daughter was sent to an institution because that\'s

all that was available. I speak to history to

please remind the committee that what we have today

is so superior, but, please, do not make cuts in

what is so superior to what we had 35 years ago.

It\'s extremely important to me that the

children of today have the supports that my

daughter did not have, nor did her family. Her

family was pretty well torn apart once Suzette was

required to enter an institution. She no longer

had the support of her aunts and uncles and

cousins. In fact, she had cousins when she came

home from the institution that didn\'t even know she

existed.

It\'s incredible to me how a community can

allow individuals to fall away from their very

system, but it happens. So I beg you, please, to

look at early intervention systems, and 303.13,

nutritional and nursing services have been removed

from the regulation. It\'s a critical part of an

individual\'s well‑being, particularly a young child

who\'s growing up in a family who is completely

confused and does not understand the disability

level of the person that they are living with.

Also, 303.33, service coordination services or

case management, we need to retain the original

language which states that families be provided

with one service coordinator. Families have so

very many people to speak to, it can be a very

confusing world out there. And now at least we

have people for families to talk to where before we

had none.

303.105, positive efforts to employ and

advance qualified individuals with disabilities,

please expand by adding, and qualified parents of

individuals with disabilities in programs assisted

under Part C of the Act. Parents bring a critical

expertise to early intervention programs.

On 303.320, evaluation and assessment of a

child and family and assessment of service needs,

assessment should be something done with a family,

not to family. It\'s extremely important that

children with special needs have their family

around them.

Now that my 42‑year‑old daughter is living in

her own home in Indianapolis at the closure of the

institution, where she has been fortunate enough to

be able to purchase her own home that she shares

with two other young ladies with disabilities, her

whole life has changed, and she is beginning to get

her family back. It\'s a very slow process when

you\'re 42 years old, and you\'re just being

reintroduced to some of your cousins and your

family members. So it\'s very important that

families be included in any evaluation and

assessment of the child. They can be your best

gold mine of information.

I\'d like to thank you very much for allowing

me to speak. Thank you.

MS. DIRRIGL: Thank you for sharing your

historical perspective.

Hello.

MS. DARLA COHEN: My name is Darla Cohen, and

I\'m the Discipline Coordinator for Family at the

Riley Child Development Center Leadership Education

Neurodevelopmental Disabilities Program, our LEND

project.

Some of the points that I\'d like to comment on

have already been made, but I would like to

especially note, if you could please remove the

language as stated in proposed 303.601(a)(1)(iii).

As a parent of a child with special needs, and as a

professional, working with families on a daily

basis, I believe that the proposed language

devalues the parents, whose expertise, just by

circumstance who have expertise that happens to be

in the fields of early intervention, early

childhood, early childhood special education or

child development.

My responsibilities on a daily basis are to

train families to be in leadership positions and to

work in those fields. And I think a better

solution would be, if you would require a balance

of parental perspectives, and include some families

who both work professionally in the field, as well

as those who do not, that would be better.

And the second comment I\'d like to make has to

do with the deletion of nutrition services. Many

of the families that we see at Riley Hospital for

Children have nutritional issues of a monumental

consequence. And without those services, which

affect all aspects of development, I don\'t think

early intervention would be as effective.

Thank you for your time.

MS. DIRRIGL: Thank you. I appreciate it.

Hello.

MS. FUNMI IGE‑WRIGHT: Hello. My name is

Funmi Ige‑Wright, from Columbus, Indiana. I don\'t

have a picture of my daughter, but she is right

there, the little baby over there. That\'s the best

I could do at this time.

As I stand before you or sit before you, I

represent my daughter, Yomi Wright. I also

represent our family, and I feel like I represent

other families who have been blessed with children

that have Down Syndrome, and the larger community

of families who have to care for children with

special needs.

This is a relatively new journey for our

family. It started almost 14 months ago when Yomi

was born. Our initial reaction was shock and

grief, grieving for our daughter who we assumed we

would get. This process didn\'t end until we found

and met others who had been called to walk the same

journey as we have.

Between the shock, the emergency surgery, the

recuperation that followed for her, we just went

through the motions of signing here, filling out

forms there, just doing whatever we were asked to

do, without a clear understanding what we were to

expect from the forms, or life in general, or the

system. Survival was uppermost in our minds for

her and for us. Nothing else mattered more. And

coordination of services was the furthest thing

from our minds.

Somewhere in the madness, we found we had a

case manager or coordinator, and then the phone

calls came, evaluation was done, and we finally

started getting some services when Yomi was about

five months old.

In hindsight, I can see we were in the zone

of, \"you don\'t know what you don\'t know.\" And if

it were not for the coordinator or case manager

helping to coordinate all our services, our

daughter would have been worse off than she is

today, despite the fact that she has well‑meaning

and educated parents. We were so overwhelmed with

our new situation, and trying to learn not just

about our daughter\'s diagnosis and her future

potential, but also about a system full of

opportunities and quirks.

What was supposed to be available, what help

was there, what did she need, what will she get,

would insurance cover it, just a ton of things to

learn, what therapies did she need. Could we

survive financially? Without our coordinator

providing us with the adequate information and

coordinating our services, we could not have made

the transition to the zone of, \"you know what you

don\'t know,\" as quickly as we did. During this

period, we learned very quickly after Yomi was

born, even though John and I were engineers, and we

make a decent salary, how vulnerable we were

personally. I wondered which one of us would have

to take a second job to meet the bills.

Speaking of insurance, we would like to be

able to keep our private insurance to be used for

additional services that Yomi needs, which may not

necessarily covered under the IDEA, but which we

consider important. Our daughter will need all the

help she can get.

Without a First Steps program, I often wonder

whether Yomi would have done as well as she has,

she is doing, without the help of the specialists

despite having learned parents. We have a house

full of books on Down Syndrome and how to help her,

but what we have learned from working with

occupational therapists, physical therapists,

speech pathologists, and several others, each with

their own in‑depth expertise, is invaluable.

The evidence of their work is seen in the fact

when Yomi was home four to five months with no

services, her progress was slow despite all that we

did at home. When we finally got a physical

therapist and following an occupational therapist,

we could see a change in her abilities within a few

weeks.

With the system, we stumbled on getting speech

pathologists early. We had evaluators, none of

whom were speech pathologists, telling us we didn\'t

need the services. We finally got the okay, and it

was dependent on whether or not the therapist was

available. Today Yomi is delayed speechwise for a

one‑year‑old, and we are still just learning the

basics of sign language.

Whatever you take away from what I\'ve said,

include the following, please: Early intervention

by the appropriate specialists, early is key to

Yomi reaching her full potential. And I can\'t

overstate how early. Providing what is needed so

that we have enough specialists to serve all is

important. Whatever we need, whether it\'s

individuals, contractors, or agencies far and wide,

let\'s do it.

We parents are called to walk this difficult

journey. We need someone versed in the ins and

outs of the system coordinating the services and

helping us keep on track. It ensures our

understanding of what is available to us. Don\'t

take this away from us.

Lastly, as a society, we can choose to do what

it takes up front to make sure these children are

productive members of society in the future, or we

can skimp and pay later to take care of individuals

who are totally dependent on the system and in some

cases helpless.

As you deliberate and make your decision, I

want you to remember Yomi. She is not a number.

She is a part of our future.

Thank you for the opportunity to share our

lives with you.

MS. DIRRIGL: Thank you. And thank you for

your whole family coming.

Hi. Welcome.

MS. DAWN DOWNER: Hi. I\'m Dawn Downer, and

I\'m the Part C Coordinator for Indiana. I want to

welcome everybody and thank you for coming.

The comments that I\'m going to share with you

today are from Infant Toddler Coordinator

Association, and I\'m very pleased to present the

following:

The association does not support the proposed

requirements in 303.42O(a)(4), requiring parental

consent in order to access public insurance, and

the requirement in 303.520(a(i), requiring parent

consent to disclose personal identifiable

information in order to access Medicaid

reimbursement.

Part C, as you know, was designed by Congress

as an interagency system that must utilize all

available resources to support the needs of

eligible children and family. Federal Part C funds

were designed to be the glue money to serve in the

event that federal, state, and local funds were not

available to pay for services. And statutory and

regulatory language, related to the payer of last

resort, require that all resources, including

public insurance, be utilized prior to the use of

Part C funds.

The association does not consider this change

to be consistent with statutory language. The

potential loss of that Medicaid revenue will be

devastating to states who are already struggling to

support service provision, and Indiana is included

in that.

In the 2005 Annual Performance Table on Fiscal

Resources, 32 states were able to quantify the

amount of revenue derived from Medicaid.

Additional states indicated that they knew that

Medicaid was the payer, but they couldn\'t quantify

to what extent.

The amount of Medicaid revenue ranged from

4 percent to 66 percent of the total state early

intervention budget. This amount is underreported,

as many states indicated they did not have

documentation of actual amount of Medicaid revenue.

The association does support the language in

303.420(a)(4) requiring the parent\'s consent to use

their private insurance.

The association does not support the addition

of Subsection (a)(2) and the proposed revision to

the definition of native language and 303.25. This

language is not contained in Section 602,

Subsection 20 of the statutory definition, nor is

it in the current Part C regulations at 303.401(b).

This additional requirement to provide all services

to eligible infants and toddlers and their family

in the language used by the child in the home or

learning environment would place a significant new

responsibility on the Part C system, resulting in

major financial and human resource implications.

The association notes that, as required under

Executive Order 12866, the NPRM includes a

discussion of the potential costs and benefits of

these proposed regulations. While there are

clearly major costs and personnel capacity

implications, the significant new requirement to

provide services in the child\'s native language is

not addressed as having potential cost implications

in this fiscal statement.

Lastly, the association supports the

clarification that 15 percent of the excess of

funds over the 460 million would be available for

the new three to kindergarten option, as included

in 303.374, but we must continue to point out the

appropriation of Part C is insufficient to serve

the current birth to three eligibility, let alone

to create a new option for preschoolers.

MS. DIRRIGL: Thank you, Dawn.

MS. DAWN DOWNER: Thank you.

MS. DIRRIGL: Hi, there. Welcome.

MR. MARK MCWILLIAMS: Thank you. Good

afternoon, or maybe it\'s good evening; I\'m not sure

which. I\'m Mark McWilliams, Director of Education

Advocacy at Michigan Protection and Advocacy

Service. I bring greetings from Lansing, and I

also bring greetings from my colleagues with the

National Disability Rights Network, representing

our protection and advocacy agencies throughout the

country.

I have written comments, and in the written

comments ‑‑ we\'ll be making some more specific

comments later, but the written comments talk about

some of the values and organizing principles of

early childhood, infant and toddler services in

Michigan, which is called the Early On System. But

I want to talk about three things as preliminary

comments to the Part C regulations.

The first is with regard to individual

accountability, and particularly with regard to

making complaints and making, and extending time

lines, or making time lines more flexible.

According to our most recent annual program report

in Michigan, under Part C we had zero complaints,

zero hearing requests, zero mediation requests, and

zero resolution sections.

Now, for most people, you would hear that

information and say, this is a system that really

doesn\'t need fixing. As a lawyer, of course, I\'m

paid to be paranoid about most things, and

skeptical about the things I\'m not paranoid about,

so I instantly smell trouble with those kinds of

things. I think, well, either the disputes that

come up in this system are either being resolved in

some other way, or they are not being resolved at

all. I hope for the former. But I fear that in

case the latter is true, you shouldn\'t make it

harder for people to file complaints.

The requirement that filing complaints and

serving them on the local service provider is a

Part B phenomenon, coming out of the Part B rules,

but making sure that the provider receives a copy

of the complaint can be very difficult in Part C.

So I think that that\'s something to be aware of.

And the same thing with the time lines,

extending the time lines or increasing flexibility

for time lines of evaluations and referrals. In my

experience, again mostly with Part B providers, but

I think it could happen with Part C, is that is

sometimes interpreted as a license to extend

evaluations indefinitely. So I would be very

careful about regulations that gave flexibility to

organizations to extend those time lines.

The second point I want to talk about is

system accountability. I know that there is

increased emphasis in IDEA 2004 on monitoring and

outcomes. There was an effort in Michigan to

redesign Part C, so to speak, the Early On System.

That\'s fairly recent. And as part of that, there

was a study done on identification rates and a

study done on fiscal issues.

The identification study, which was finished

last year, identified differences in rates of

identification from county to county, which would

not show up in a statewide average. Similarly, the

fiscal study that was done showed that although

there were not really regional differences in how

services were funded, but there were some local

county‑to‑county differences within regions.

So, part of the accountability picture, I

think, has to be to dig down beyond the state

numbers, and in some cases even dig down beyond the

regional numbers to find out what the differences

are, because those differences can mean big

differences for the lives of parents.

Finally, just a word about funding. The

fiscal study identified that our current system of

funding services primarily through intermediate

school districts resulted in intermediate school

districts and local programs providing a

significant percentage of the funds. In this day

and age, when these services are so critically

important, full federal funding for these programs

is critical. And the Part C funds we get from the

federal government are paying a small percentage,

according to the study, of the services that are

actually provided.

Let me conclude, I think you\'ve heard very

eloquently from the parents and providers who are

here on the value of these services. I give you

the perspective of someone who does mostly work

with older students, children and youth with

disabilities through Part B. We work mostly for

children who are in trouble for some reason or

another. They don\'t call us if they are doing

well. They call us if they are having trouble

either behaviorally or academically, they are being

pushed out of school, they are being pushed into

juvenile court, they are being asked to drop out,

being subject to segregation, all kinds of

problems.

It\'s my sense that early intervention, this

service is so critically important and is putting

emphasis on this program. I will share my written

comments with you and make more detailed comments

later on.

Thank you.

MS. DIRRIGL: Thanks, Mark.

MR. REID: Thank you, Mark.

MS. DIRRIGL: Welcome.

MS. DENISE ARLAND: Hi. Thank you. My name

is Denise Arland, and I am a parent of 13‑year‑old

quadruplets.

MS. DIRRIGL: 13‑year‑old quadruplets.

MS. DENISE ARLAND: Yes. They were part of

the early intervention system here in Indiana for

about two and a half years of their life. I\'m

happy to report that we are one of those other

success stories. I have a child who can talk who

they said wouldn\'t talk, and a child who can walk,

and they said they wouldn\'t walk. And we firmly

believe that that\'s because of, not only the

services that they got from early intervention, but

what we learned as a family from the providers

coming into our home, providing those services.

When they were almost three years old, I was

appointed to Indiana\'s ICC, and a year later I was

the chairperson of ICC, and I served in that role

for about five years. I really feel like I was

raised as a parent leader by the early intervention

system here by great mentors and great providers,

who helped me along the way to where I am today.

So some of my comments will be directed towards the

importance of parent leadership.

I believe that strong Part C regulations that

hold states to a high standard of improving

outcomes for infants and toddlers with disabilities

are critical as states work very hard to offer

services in an environment of continued funding

shortages. Equally important, though, is the

inclusion of families at all levels of policy

development and implementation.

Feedback that I have heard from families

across the country indicates that, in general,

families are feeling less involved in both policy

development and implementation at all levels of

Part C nationwide. I believe it\'s critical to give

parents opportunities to funnel their expertise and

their passion into the system that they feel so

strongly about. So I just ask that the department

consider that strong language about parental

development in Part C is helpful in guiding states

to make efforts to include families as partners,

not only in service delivery, which we all have to

be, but also in aspects of systems development.

So I have some written comments for you as

well, but I just wanted to address a couple of the

items. Speaking as a past ICC chair, I strongly

urge a change in the proposed language about parent

representatives on the ICC in Section

303.601(a)(1). As a former ICC member and chair, I

value the input of all of the family members who

participated. And some of those family members,

like me, were people who did not provide early

intervention services, but other family members

were people who provided early intervention in the

system, specifically as a service coordinator. In

our current ICC, I think someone mentioned a parent

who is a developmental therapist and part of an

eligibility determination team.

Allowing parents who understand the issues

from a dual perspective adds another element to the

conversation and the discussion. Our parents who

are providers can often anticipate the impact of a

policy or procedure change that may be discussed in

a unique way because they can see both from the

inside and the outside how that might affect

families, because they see not only their personal

experience, but the experience of families they

have worked with. To prevent such parents from

participation removes a valuable perspective from

the discussions.

With that being said, though, I also

appreciate that an ICC with parents only, who are

service providers, would also be missing that

perspective of conversation. So I suggest a change

in language that would allow the inclusion of both

sets of parents by requiring that ICCs include

parents who represent a broad range of

perspectives, including parents who are not

providers of early intervention services. So that

would be a recommendation.

The second point I wanted to make is that I

oppose the language in 303.420(c)(1) that allows

Part C systems to use due process procedures

against families who choose not to consent to an

evaluation. As far as I know, Part C systems

nationwide are now and always have been voluntary.

And so to include language, although I understand

it may be to align Part C and Part B, but to

include the language to move away from this

voluntary participation could result in the

intimidation of families for decisions that they

are making that they believe is in the best

interest of their child and family. So I object to

that language and advocate for its removal.

The final point I wanted to make is in

proposed 303.320(c). I would encourage the

department to consider more family friendly

language to describe the voluntary assessment of

the family. This terminology that is used in

proposed regulations can be interpreted many ways

by families, but in its current form, and I think

someone has said this, it sounds more like

something we are doing to a family, rather than

something we are doing with a family.

So I support the terminology that the Early

Intervention Family Alliance has recommended, which

is the family‑directed assessment, and to use that

throughout the document when referring to family

assessment. This terminology makes it much more

clear that a family is the primary partner in the

process.

And I do appreciate the definition that\'s

included in the proposed regulations, as it

clarifies what the assessment would include. But I

still believe that by changing that terminology

just a little, it would strengthen the family

friendliness event section.

Thank you very much.

MS. DIRRIGL: Thank you for your comments.

Hi. Welcome.

MR. STEVE VIEHWEG: Thank you. My name is

Steve Viehweg, and I am a social worker in the

early intervention system. By day, I work with

Riley Child Development Center, which is a training

program in developmental disabilities. By night,

I\'m a social worker with the early intervention

system.

I\'ve also, when we redesigned our system in

Indiana, worked a lot with our training effort to

try to help people understand the intent of the

legislation. And I found that by a combination of

doing the actual providing of service and training

seemed to be a good mix to help people understand

but also to help me understand the intent of the

legislation.

I\'ve always been impressed with Part C as a

law because it\'s family friendly and talks about

including families in ways I don\'t see in other

legislation, and so I\'m glad to have this

opportunity to talk about this. I also am the

founding chair of our state\'s Infant and Toddler

Mental Health Association, and I currently serve as

an appointee to the governor\'s Council for People

with Disabilities program.

My comments are just my own, and actually they

echo what you\'ve heard a lot already today. You\'ve

just heard from Denise about the concern of the

family‑directed language in the evaluation

assessment, and that apparently is a concern for

people. I\'ve heard that a lot about making sure

that language does support that an assessment is

done with a family as opposed to a family. But

that\'s really important from a family perspective.

As a social worker partnering with families, I

come to the table late a lot because people don\'t

think of using that service until later. But I am

also concerned about the removal of nutrition and

nursing services or other health services. I often

jokingly refer to us as the \"Little Twelve\" because

a lot of families get the big four, and they don\'t

think about the others.

But there\'s really an important piece that

both nutrition and nursing can provide. I\'ve been

many times on teams where that\'s been an important

addition, and I\'m worried that if it\'s just still

encouraged as an other service, that it would be

missed completely.

I\'m also then finally concerned about, as

you\'ve heard many times today, about this change in

the time line. While it is challenge to meet the

45 days, and I understand that originally that came

through sort of out of, do we do 30, 45 or 60, that

there was no real reason for it. To change it with

such an open idea of when the family gives consent

does raise the question about when would that

happen.

And perhaps there is another solution to that

problem. If states really do have trouble, maybe

extending the number of days so they could have

more time, but certainly maintaining that

requirement that states keep track of the reasons.

And it\'s already stated in the current legislation

that families would be the only group that could

extend the time line if they needed more time, and

maybe we just need to do a better job of keeping

track, rather than trying to change something in

respect of the need for getting kids into the

services when they need it.

I really appreciate the opportunity to share

this. I\'m glad you came to Indiana so we could

have this opportunity in the middle of doing a

million other things with our families. Thank you

for the opportunity.

MS. DIRRIGL: Thanks, Steve.

Hello.

DR. ANNA DUSICK: Hi. My name is Dr. Anna

Dusick, and I\'m here representing the Indiana

Chapter of the American Academy of Pediatrics. I

appreciate this opportunity to be here in front of

you today, advocating for infants and children with

special developmental needs.

We value Part C programming in Indiana, First

Steps, and its partnership in providing multi‑

disciplinary care to infants, toddlers, and those

young preschoolers under three with special

developmental needs.

The Indiana Chapter of the American Academy of

Pediatrics opposes a change in the current 45‑day

requirement for completing the consent, screening

assessment, and IFSP. Moving that time line

forward to the consent for evaluation will be a

disincentive for local referral points to contact

the family and obtain consent. Ultimately, this

will delay the initiation of services for those

infants and children who will be eligible. While

it may improve the compliance statistics, it will

stretch the time that will be taken until services

are provided. And it won\'t reassure the referral

sources that prompt action is being taken in order

to obtain these services for children.

We also oppose any changes in the language

that a multidisciplinary team allows only one

individual to complete the evaluation and

assessment, regardless of the qualifications of

that person in more than one discipline. For

example, a one‑month‑old with a feeding disability

could be evaluated by a team of a special educator,

who is also a developmental therapist.

However, we do support the language on

informed clinical opinion as part of the

assessment, as dependence on standardized testing

of developmental milestones will be insufficient

for the youngest infants.

We advocate continuing the use of nutrition

and nursing services. Certainly, good early

nutrition is paramount to good central nervous

system development and ultimate development.

The Indiana Chapter also wants the definition

of early intervention services to recognize that

the provision of sign language can be an

appropriate strategy to improve communication in

infants and children who have hearing but are

communication impaired, as well as those who have

hearing impairments, and the definition should not

preclude its use. In addition, sign language can

be used and taught by several professionals,

including audiologists and teachers.

We support the continued use of natural

environments and promote integration of the child

and family in the community.

Thank you for conducting these hearings and

giving us an opportunity to respond to the proposed

changes. We value this program and its commitment

to infants and toddlers with special developmental

needs. Thanks.

MS. DIRRIGL: Thanks for coming, Dr. Dusick.

Hi.

DR. MARY MCATEER: Hi. I\'m Mary McAteer. I\'m

a pediatrician in private practice here in

Indianapolis, and I wanted to take this opportunity

to let you know how First Steps used to work, and

how it\'s working now, because you\'re looking at

changing things, and I want you to make sure that

the changes are for the better.

When I was in first in practice about 20 years

ago, First Steps was brand new, and it was a

Godsend to parents, because whenever I suspected

anything, I could say, Hey, there\'s no obligation.

You g, you get checked out. They communicate back

to me. We develop a plan on what\'s going to happen

with your child. We were in communication with

each other, and it was a wonderful thing.

Parents really loved that ability to be

flexible, have someone come to their home, and also

knew that I was able to talk to them.

But as the years have gone by and the rules

have increased, it\'s become much more difficult to

access, at least from the primary care

pediatrician\'s standpoint. I make a referral. The

parents contact the First Steps agency. And it

takes a long time for things to start happening,

sometimes between even my well visit time

assessments. This frustrates parents very much.

Also, I did not even know that nutritionists

were available to help us with some children who

have feeding needs or nutritional support, so there

is kind of a disconnect, I think, between what

could be available for my patients and what I don\'t

have.

Insurance companies are not an answer. They

do tell us over and over again that they will not

cover services because it is not a loss of ability

for the child. And I don\'t know why they think

that that would work for children because that is

not the way children work. They gain abilities as

they go.

So I also very sadly am here to report that

there are lots of providers who are leaving First

Steps as First Steps providers, and they\'re seeking

clients or patients from other sources because of

the rules and regulations and the paperwork that

has burdened them providing the services that our

children need.

So I hope that this helps. I am very much ‑‑

I love First Steps. I\'ve seen it work so many

times in so many different ways for parents and

families. And I\'ve also heard at three years old

the complaints that parents see when the First

Steps type of quality steps down a little when the

public schools step in. So thank you.

MS. DIRRIGL: I have a question, because I

want to make sure we\'re clear in our understanding.

What is it that you would like to see happen? You

explained your frustrations with families coming

into the system. What is it that you would like to

see happen? I want to make sure we understand, if

you are talking about when the 45‑day time line

should start, please talk a little bit about that,

but what is it you would like to see happen?

DR. MARY MCATEER: I would like there to be an

official way for me to state my concerns. Right

now I hope I communicate well enough, but in an

office setting, and when you\'re talking about

something so emotionally tied to the parents, they

don\'t understand what my concerns are, and so I do

not have an opportunity to directly communicate any

more with a service coordinator to say, here\'s what

I\'m worried about, even writing a prescription for,

you know, here\'s what I would like to have done. I

would like that to be done very quickly because

parents, when they buy into this, they need to get

going, and they really want to get going, and

that\'s a positive move.

So I want to see the 45 day at least not be

extended longer. That would be terrible, I think.

Three years is a very short period of time in the

development of a child, so every day these parents

are feeling are ticking away. Like one parent said

earlier, the five months she sat there and didn\'t

know what they were doing.

MS. DIRRIGL: All right. Thank you.

DR. MARY MCATEER: Thank you.

MS. DIRRIGL: Hello.

MS. LESLIE HINE: Hello. My name is Leslie

Hine, and my youngest son, Evan, received early

intervention services through First Steps in

Indiana. Evan was born six weeks premature with a

heart and kidney defect, a 70 percent hearing loss

bilaterally, four hernias and leg length

difference. First Steps was helpful to our family

for many reasons. Evan was able to receive therapy

sessions, audiologist visits, hearing testing,

hearing aids, and also orthodontics for his feet.

I believe that we are a success story from

First Steps. We received the early intervention

right at the right time. He graduated out. His

language is age appropriate as of right now for a

kid getting ready to turn four years old.

I believe that it is crucial for the family to

be able to drive the services for their child. I

would like to speak about the evaluation and

assessment of the child and family assessments of

services needed. For our family, an assessment

tool was not an effective means to determine needs

or services, but the ability for us to have input

for Evan was so important in driving the plan for

our family.

We have chosen oral communication, and it was

a decision that only our family could make, and it

is important that First Steps was able to support

whatever path that we chose.

I thank you for giving me this opportunity to

speak. I have included my information at the

bottom if there are any questions.

MS. DIRRIGL: Thank you, Leslie.

Hi. Welcome.

MS. MARY JO PALADINO: Thank you. Thank you

for coming to Indiana.

MS. DIRRIGL: We\'re happy to be here.

MS. MARY JO PALADINO: My name is Mary Jo

Paladino. My husband and I are parents of six

children, four of whom have received services

through IDEA.

The early intervention services that our

children received were primarily funded through

private pay, out‑of‑pocket expenses, and private

insurance, so I feel like we have a pretty strong

understanding of the costs of early intervention

services. I\'ve also had the opportunity to work

with Part C early intervention services through the

Family‑to‑Family project, which is a

parent‑to‑parent project, focusing on families of

children from birth to three, and Indiana\'s

Transition Initiative for Young Children and

Families. So in a professional aspect, I\'ve had

the opportunity to work with a lot of families who

have benefited from Part C services.

I have three points that I would like to make.

The first one, as I\'ve heard others address, the

nursing and nutrition services, I would just

briefly encourage you to retain the language that

specifies nutrition and nursing services. The

services are more likely to be used if they are

specifically mentioned, and it aligns them then

with the qualified personnel services that are

outlined as a registered dietitian and nursing.

The second area that I\'d like to address is

for families. I believe that public funding, what

public funding is available, and what the

eligibility criteria is, and how it works, is

critical for families to understand, again to

understand what it costs for services. I\'m

encouraged by the proposed regulation regarding

policies related to the use of insurance and public

funds, and I agree that families need to be

informed of any and all costs as part of consenting

to the use of both private and public insurance. I

believe that this increases public and private

financing literacy of families.

However, understanding other public funding,

such as Title 5 funds through children with special

healthcare needs and/or medical waivers is just as

important. So, in reference to Subsection 303.33,

which would not require service coordinators to be

responsible for identifying funding sources for

those services not covered under Part C of the Act,

and identified as the other services on the IFSP

under Subsection 303.344(e), it seems to somewhat

contradict the service coordinator\'s role outlined

under Subsection 303.33, Section 2, which says to

assist a parent in gaining access to and

coordinating the provision of the early

intervention services, and coordinating other

services identified in the IFSP as outlined under

303.344(e) that are needed or are being provided to

the infant or toddler with the disability and that

child\'s family.

A key part of assisting a parent in gaining

access to other services is identifying the

potential sources, funding sources. So, for

example, consider a child with a cochlear implant,

who may be eligible for Title 5 services to cover

the mapping or battery costs for the processor, a

service coordinator is much more likely to know

about that source than the parent. So I believe a

service coordinator\'s responsibility should include

knowing the funding sources, and then teaching

families how to access them, which may include

assisting the family in actually completing the

application. This promotes the financial literacy

that a family needs to navigate the system beyond

early intervention services.

And then, lastly, I would like to address some

of the language in the section under transition,

and to just ask for a little more clarification,

because I believe there is still some confusion

under Section 303.209, Section(c)(1) and (2). The

language, \"with the approval of the family,\" in

Sections (1) and (2), is this to mean that the

family can choose not to have the 90‑day to 9‑month

conference to discuss services?

If the lead agency is not the state

educational agency, and therefore cannot determine

eligibility of Part B services, must the 90‑day to

9‑month conference include the LEA? Can a 90‑day

to 9‑month conference be conducted with only the

family and the service coordinator? And if so, how

does that differ from just a regular IFSP meeting?

And Section 303.209(c)(1) with regard to the

language, \"at the discretion of all the parties,\"

is this referring to what period of time that

conference will be conducted during that 90‑day to

9‑month period, or is it referring to the

discretion of the family to choose who will be at

the meeting or not at the meeting?

Part B of the legislation requires that the

LEA be present, and I would recommend that Part C

language with regard to the conference align with

Part B.

Thank you for the opportunity to give these

comments.

MS. DIRRIGL: Thank you, Mary Jo.

MR. BUTTON: That\'s the last of the

individuals that have signed up to provide comments

this evening. Did we miss anyone? Anyone want to

reconsider?

Thank you for coming. It\'s been a delight to

be in Indianapolis. This has been very successful.

I think the comments have been very useful to us,

and we appreciate all of you taking the time to

share your thoughts with us this evening.

Once again, I hope you have a lot more luck

than we\'ll probably have in finding your way out of

here tonight. It will be a test, I think, of not

only your acumen, but your perseverance. So, lots

of luck. If anybody finds their way out, please

give us a call, so we can follow your directions.

Thanks so much. We appreciate seeing you all

here tonight.

(The meeting was adjourned at 6:30 p.m.)