Sunday, April 29, 2012

Where to Start-Maine


The Child Development Services (CDS) system is an Intermediate Educational Unit that provides both Early Intervention (birth - two years) and Free Appropriate Public Education (FAPE for ages three - five years) under the supervision of the Maine Department of Education.

State Intermediate Educational Unit
146 State House Station
Augusta, ME 04333

(207) 624-6660 Voice
(207) 624-6661 Fax

The Handicapped Infants and Toddlers Program was set up in 1986 by Public Law 99-457, Part H. It offers federal money to any state that will establish a system of early intervention services to children with special needs, age 0-2, and their families. The intent of early intervention is to identify and treat certain conditions or needs early, and thereby lessen or prevent the effects.
Part H regulations set out specific guidelines a state must follow in order to receive the federal funds. Each program must be designed to include:

1. A focus on the family
This represents a significant shift in philosophy from past service delivery systems. Part H recognizes that every family has resources and skills of its own and considers these in the process of early intervention. A family is offered support and education; its strengths and needs are used to determine, write, and implement the Individualized Family Service Plan, the IFSP. It is the written document of goals and objectives spelling out the program of services and therapies.

2. A multi-disciplinary assessment
The IFSP must be based on results from a number of formal tests, observations, and interviews gathered by family and professionals from different disciplines, i.e. medical doctors, speech pathologists, psychologists, etc. The child's present level of performance (what he/she can do, as well as weaknesses) is considered.

3. Comprehensive services provided by qualified personnel
The state must have available a full range of services, including medical and social work and parent education. Related services are those that support the direct services; they include, but are not limited to: transportation, physical and occupational therapies, counseling, speech and language, recreation, and audiology.

4. Interagency cooperation, with public monitoring
Different state and private agencies may share responsibility for the funding and providing of services, but they will be coordinated by one state department.

5. Procedural safeguards
Parents and their children will have certain rights regarding their involvement with the early intervention system. Although each state may add to what the federal law requires, these three parental rights must be included:
-the right to give or deny consent at any step in the process;
-the right to confidentiality of all information regarding their family;
-the right to challenge and appeal any decisions made during the process.

6. FAPE (Free and Appropriate Public Education)
The sum of therapies and services designed for each family and child constitute the free and appropriate public education guaranteed by Part H to every child with special needs who is under five years of age.* In order to be considered "appropriate", the program must conform to all of the above (#1-#5) and place the child in the "least restrictive environment"(LRE). This is the setting where the child can best benefit from the services and, at the same time, be included with children without disabilities as much as possible.

*Early intervention services for children under three in Maine include evaluation, the Individualized Family Service Plan, and case management. For children three to five, FAPE services include evaluation, the IFSP, case management, and any needed therapy.


Early intervention services are those offered to children with special needs from birth through age two. If a condition or need that may affect a child's development is found and treated early, the effects may be lessened or prevented. When a child is identified with a disability or is deemed to be at risk of a developmental delay, a program of therapies/strategies is then designed. The federal law called the Individuals with Disabilities Education Act, or IDEA, covers special education for children of all ages and guarantees rights to children with special needs who are under five.

Each state writes its own policies to carry out the federal law. Maine has chosen to directly fund only the special education services for 3-5 year olds, but help is available to children from birth through two, also.

If I think my child has a disability, what should I do first?
If your child was not identified at birth with a disability, and a physician or nurse is not aware of your concern, you could start by discussing it with one of them. Or you can call Child Development Services, the agency that is in charge of Childfind in Maine.

What should I say to them?
Tell them you think your child may need early intervention services and ask how to go about getting an assessment done. Start and keep a file of names and phone numbers of people you talk to, and write down all the information they give you. If there's anything you don't understand, ask for explanations.

What is an assessment? Who will do it? Will I have to pay?
Evaluations and assessments are ways of gathering information about your child to decide if he or she needs early intervention services. A team of professionals will conduct the evaluation by talking with you, looking at medical records, and examining and observing your child. Then everyone will get together to discuss the results. You might be asked to use your insurance or Medicaid to pay for the evaluation, but you are not required to do that.

What makes a child eligible for services?
For children under two, eligibility is defined in one of the following ways:
* Certain specific conditions, like Down Syndrome and spina bifida, will mean a child qualifies for early intervention services.
* Prematurity or complications at birth may indicate risk of developmental delay and may qualify a child for services.
* If the assessment/evaluation results show a delay in one or more area of development, a child may qualify.

Who will pay for the services if my child is found eligible?
Your case manager, assigned to you by the state, will help you find funding for the early intervention services decided on for your child. Your private insurance, Children's Services, Medicaid, and Social Security Income are some of the possible sources.

Who can I call if I have more questions?
Your case manager will help you find answers to most questions you have, but some other sources of information are:

Maine Parent Federation - 1-800-870-7746 or (207)623-2144
Children's Services - 287-4250
Coordinated Care Services - 1-800-698-3624 ext. 7-5139 or 287-5139

What should I do if they find my child ineligible, but I still have concerns?
The first step will be to write a request for a review. There may be time limits, so check with your case manager for more details. If you disagree with the result of the review, you may ask for an appeals hearing. In any letter you write to file a complaint, always include the reason for the complaint, all facts about it, and the results of any previous complaints you've made.

For more information on this or other topics related to the needs of children with disabilities, call or write Maine Parent Federation, P.O. Box 2067, Augusta, Maine 04338, 1-800-870-7746 (In-State Only), 207-623-2144, or e-mail MPF at

This fact sheet is paid for through grants from the Federal Department of Education and the State of Maine Department of Education, utilizing funds under the Individuals with Disabilities Education Act.

Easter Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.

You can also reach Easter Seals at:
Or, via regular mail at:
Easter Seals Maine125 Presumpscot Street
Portland, ME 04103


The Office of Child & Family Services, Children’s Behavioral Health Division, is very pleased to announce that CMS, the federal Medicaid authority, has officially approved our request to develop a Home & Community-Based Waiver Program for children with Intellectual Disabilities and/or Pervasive Developmental Disorders.

TEFRA: (Tax, Equity and Fiscal Responsibility Act of 1982)
Under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), states may provide Medicaid coverage to children with severe disabilities, disregarding their family income, if these children require care at an institutional (hospital, nursing home or intermediate care facility) level.
When a child receives extended care in an institutional setting, family income is disregarded as a qualification for Medicaid. The TEFRA State Plan Option makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who choose to care for their child at home. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA State Plan Option. Because states vary widely in the availability of institutional care for children and the clinical criteria for admitting children to these institutions, the numbers of children and youth with special health care needs (CYSHCN) who receive Medicaid benefits under this option also varies widely from state to state.

Please check with your state office to see if TEFRA is offered in your state.


Ellie Mulcahy, R.N.C.Director, Maine Genetics Program
Maine Department of Health and Human Services
286 Water St.
Augusta, ME 04333


Began in 2001 as a few families meeting in each other’s living rooms.  They have grown over the years to include families, self-advocates, educators and professionals.  They sponsor monthly social gatherings, playgroups, guest speakers, and workshops.  They offer members a chance to reach out to each other at any time through an online forum. Every year we donate books to every public library in the state. We host annual Buddy Walks in Portland and Augusta that draw over 500 people. We provide information packets, and flowers to families with new babies. And they are proud to say that they still meet monthly in each other’s living rooms. Supporting each other is at the heart of their group.
P.O.Box 705
Windham, ME 04062
phone/fax (866) 571-2223

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