Early identification of cerebral palsy can lessen developmental
problems and lead to appropriate intervention when it helps the most. Early intervention programs are family-centered in which
professionals and families work together with the child in specific activities. Educators, physical and occupational therapists,
social workers, speech- language pathologists, psychologists and physicians can assist families by providing information and
education.
Activities for children with cerebral palsy may include:
- speech and language therapy;
- occupational therapy;
- physical therapy;
- medical intervention;
- family support services;
- early education; and
- assistive technology.
As a child gets older and begins formal schooling, the intensity
of services will vary from individual to individual. Persons with cerebral palsy are usually able to attain a substantial
degree of independence but, in some cases, may need considerable assistance. Services for the school age child may include
continuing therapy, regular or special education, counseling, technical support, community integration opportunities, recreation
and possible personal attendants. A key factor seems to be a supportive family. People extensively affected by cerebral palsy
can still be highly functional and independent. The HEATH Resource Center,
the clearinghouse on postsecondary education for individuals with disabilities, states that a significant number of students
with cerebral palsy are enrolled in colleges and universities.
Important advances have taken place in the last 15 years which
have had a great effect on the long-term well-being of children born with cerebral palsy. Advanced technology, including computers
and engineering devices, has been applied to the needs of persons with cerebral palsy. Technological innovations have been
developed in the areas of speech and communication, self-care, and adapting living arrangements and work sites. The future
may bring even more significant applications.
Another important development has been the increased ability
of persons with disabilities, including those who have cerebral palsy and other severe disabilities, to live independently
in the community. Adults with cerebral palsy are now living, with or without assistance, in their own apartments or townhouses.
Independent Living Centers have also proven to be important resources for persons with disabilities.
The federal law known as Public Law (P.L.) 102-119 guarantees
certain rights to young children (ages birth to 5) with special needs. This law is the most recent amendment to IDEA.
Q:
What are early intervention services?
A: These are services for infants and toddlers that are designed
to identify and treat a problem or delay as early as possible. Early intervention services are offered through a public or
private agency and are provided in different settings, such as the child's home, a clinic, a neighborhood daycare center,
hospital, or the local health department.
Early intervention services can range from prescribing glasses
for a two-year-old to developing a complete physical therapy program for an infant with cerebral palsy.
Q:
Who do I contact first for help?
A: Each state decides which of its agencies will be the lead
agency in charge of early intervention services for infants and toddlers with special needs. In your state, the first contact
person may be an early interventionist (an early childhood specialist working with infants and toddlers), someone with the
lead agency, or someone in your state's Child Find office.
To find out who can help you in your area, contact the National
Information Center for Children and Youth with Disabilities
(NICHCY) at 1-800-695-0285 (Voice/TT). Explain that you want to find out about early intervention services for your child
and ask for a name in your area.
Important. Write down the names and phone numbers of everyone
you talk to. (You can use the Sample Record-Keeping Worksheet on the last page of this document as a guide.) Having this information
available may be helpful to you later on.
Q:
What do I say when I talk to my local contact person?
A: Explain that you think your child may need early intervention
services and you would like to arrange for an evaluation and assessment. Write down any information you are given.
Q: What is an
evaluation and assessment?
A: Evaluation refers to the procedures used to determine if
a child is eligible for early intervention services. Assessment refers to the ongoing process of gathering and using information
about how a child is developing and determining what kind of help he or she might need.
In regards to your child, this information may come from some
or all of the following:
- Doctors' reports;
- Results from developmental tests given
to your child;
- Your child's medical history;
- Observations and feedback from all members of the multidisciplinary
team, including parents; and
- Any other important observations, records, and/or reports about your child.
Q:
Who does the evaluation and assessment?
A: It depends on your state's policies or rules. Ask your local
contact person about this. Usually, a team of professionals, which may include a psychologist, an early interventionist, and
an occupational or physical therapist, will evaluate a child.
Q:
Who pays for the assessment?
A: Under P.L.102-119, evaluations and assessments are provided
at no cost to families. Check with your contact person for local guidelines.
Q:
Will I have to pay for any services if my child is found eligible?
A: Usually, services are provided at no cost to the family.
You may have to pay for some services, depending on your state's policies. Check with the contact person in your area or state.
Some services may be covered by your health insurance, by Medicaid, or by Indian Health Services.
In some areas, you may be charged a "sliding-scale" fee that
is based on what you earn. Every effort is made to provide services to all infants and toddlers who need help, regardless
of family income.
Q: What is a
service coordinator (case manager)?
A: When a child's needs are assessed and the child is found
eligible for services, a service coordinator will be assigned to the family. This person should have a background in early
childhood development and methods for helping young children who may have developmental delays. The service coordinator should
know the policies for early intervention programs and services in your state. This person can help you locate other services
in your community, such as recreation, child care, or family support groups. The service coordinator will work with your family
as long as your baby is receiving early intervention services and, after your child is 2 years old, the service coordinator
will help your family move on to programs for children ages 3 through 5.
Q:
What is an IFSP?
A: The family and the service coordinator work with other professionals,
as appropriate, to develop an Individualized Family Service Plan, or IFSP. The guiding principal of the IFSP is that the family
is a child's greatest resource, that a baby's needs are closely tied to the needs of their family. The best way to support
children and meet their needs is to support and build upon the individual strengths of their family. So the IFSP is a whole
family plan with the parents as the most important part of the IFSP team. Involvement of other team members will depend on
what the baby needs. These other team members could come from several agencies, and may include medical people, therapists,
child development specialists, social workers, and others.
The IFSP will describe the following: the child's development
levels; family information (with parents' concurrence); the major outcomes expected to be achieved for the child and family;
the services the child will be receiving; when and where he or she will receive these services, and the steps to be taken
to support his or her transition to another program. The IFSP will identify the service coordinator. The IFSP may also identify
services the family may be interested in, such as financial information or information about raising a child with a disability.
Each state has developed specific guidelines for the IFSP. Your
service coordinator can explain what the IFSP guidelines are in your state.
Q: Are there
any parent groups in my area that can give me more information about early intervention services?
A: There are several types of parent groups, including:
- Support groups (such as Parent-to-Parent) for families of
children with disabilities;
- Parent training and information programs funded by the federal government, such as the Technical
Assistance for Parent Programs (TAPP) Project; and
- Groups concerned with a specific disability, such as United Cerebral
Palsy Associations, Inc. (UCPA) or the Arc (formerly the Association for Retarded Citizens of the United States).
Parent groups can offer information, support, and/or training
to families of children with disabilities to help parents take a more active role in helping their children. Through such
groups, families meet other families with similar needs to discuss resources, day-to-day problems, and personal insights.
Your service coordinator or someone at your local school may
be able to tell you about nearby groups. For more details on parent groups, contact NICHCY (1-800-695-0285) and ask for their
"Parent's Guide to Accessing Parent Programs."
For the past 25 years, laws have been passed by Congress instructing
states to provide education for children and youth with disabilities. Public Law 94-142, the Education For All Handicapped
Children Act (EHA), was passed by Congress and signed into law by President Ford in 1975. This law is well known; it required
states to fully educate all children with disabilities. It has been amended several times. In 1986, the EHA was amended through
P.L. 99-457 to, among other things, lower the age at which children can receive special services to three years old. It also
established the Handicapped Infants and Toddlers Program (Part H), which is for children who need help from birth to their
third birthday. The amendments of 1990 and 1991 brought about more changes, among which was a change in the name. Now the
EHA will be called IDEA, the Individuals with Disabilities Education Act.
Information
About Programs for Children Ages 3-21
IDEA requires that all states and territories provide a public
school education to children with disabilities from ages 3 to 21, no matter how severe their disabilities are.
There are several basic rights that this law promises to children
with disabilities (ages 3 to 21) and their parents:
- The right to a "free appropriate public education" at public
expense (in some cases, this may include placing a child in a private school);
- The right to an educational placement that is based on an
assessment and evaluation of each child's own special needs;
- The right of children with disabilities to receive teaching
or instruction that is designed to meet their needs; these needs are to be clearly written and included in an Individualized
Education Program (IEP) for each child, with statements about what services the child will receive;
- The right to a full range of educational services that may
include related services such as counseling, special transportation, speech/language pathology, or occupational or physical
therapy;
- The right of parents (or guardians) to be included in making
decisions about their child's educational needs and to approve the educational plans for their child; and
- The right of parents (or guardians) to appeal any decisions
made about the identification, evaluation, and placement of the child through a due process procedure.
Finally, IDEA requires that children with disabilities be educated
in the "Least Restrictive Environment" (LRE), that is, in a setting with children who have no disabilities, with special help
provided to those who need it.
Information
About Programs for Very Young Children
Under the IDEA, early intervention services are to be made available
to infants and toddlers with disabilities, ages birth through two years. Services are not the same in all areas. To find out
what is available where you live, call the early childhood specialist in your school system or check under "Programs for Infants
and Toddlers with Disabilities" on NICHCY's State Resource Sheet. You can also call NICHCY at 1-800- 695-0285 (Voice/TT) ask
for assistance.
Congress made funds available to help states and territories
plan a comprehensive service system to provide the following services:
- Early intervention services to infants and toddlers (ages
birth through 2 years) with disabilities. If a state chooses to, it can also serve infants and toddlers at risk of developing
disabilities; and
- Special education programs and related services to preschoolers
(ages 3 through 5 years) who have disabilities.
Services for children 3 years old and up are provided by the
state department of education. However, programs for children under age 3 are provided by different agencies in different
states. Sometimes the department of education will handle all these programs; in other states it may be the health department
or another agency.
The term "infants and toddlers with disabilities" in the law
refers to children (ages birth through 2 years) who need early intervention services in any of the following areas:
- Physical,
- Cognitive,
- Communication,
- Social or emotional, and/or
- Adaptive development.
Early intervention services must be provided by people who are
qualified to work with infants and toddlers who have disabilities or who are at risk of developing disabilities. Any services
provided must be written into an Individual Family Service Plan (IFSP) that is reviewed every 6 months.
For more information about the laws that affect children with
disabilities and their families, call NICHCY at 1-800-695-0285 (Voice/TT).
The sample record-keeping worksheet below can help you start
a file of information about your child. As you contact different people and places, it's a good idea to keep records of people
you've talked with and what was said. As time goes by, you will want to add other information to your file, such as:
- Letters and notes (from doctors, therapists, etc.);
- Medical
records and reports;
- Results of tests and evaluations;
- Notes from meetings about your child;
- Therapist(s')
reports;
- IFSP and IEP records;
- Your child's developmental history, including personal notes or diaries on your child's
development;
- Records of shots and vaccinations; and
- Family medical histories.
Make sure you get copies of all written information about your
child (records, reports, etc.). This will help you become an important coordinator of services and a better advocate for your
child. Remember, as time goes on, you'll probably have more information to keep track of, so it's a good idea to keep it together
in one place.
Sample
Record-Keeping Worksheet
Problem/Topic:
Name of person or agency you talked to: Name of your contact
person (may be same as above):
Date you called: Phone number:
Results of discussion:
Action taken (if any):
Person not helpful on this topic, but may be helpful regarding
(list topics/areas/issues):
Being the “unrealistic parents” that we were, we
did not permit anyone to label Katie as having cerebral palsy. We knew that she was developing slower than our other children
but we were working very intently to help her reach age appropriate milestones. We knew Katie’s diagnosis was cerebral
palsy; to be specific left hemi-paresis; but during her early development we never heard the term spastic quadriplegia. I
don’t think that any parent wants their child to have a label.
Labels can be helpful. In our case Katie’s label has become
her badge of courage. She is a champion and an inspiration to many people.
We found that for Katie to receive the therapy that she needed,
we had to relent and allow her to be labeled. The only way to navigate the red tape and bureaucracy of our educational, medical,
and government programs is to play within their guidelines and this required that we come to terms with the label “cerebral
palsy”.
Katie began receiving early intervention services through our
local intermediate unit. She received testing for cognition, motor skills, verbalization etc… She received physical
therapy and occupational therapy. I routinely became annoyed by the “professional” prognoses that Katie would
receive. These reports seem to focus on the negative aspects of Katie’s disability. To this day I am of the opinion
that no one will ever know my daughter as well as I do and I tend to discount opinions of individuals who evaluate her after
30-60 minutes of “testing”.
By age 18 months Katie was eligible for early intervention in
a school setting however we were matching the services that she would receive at home and she was steadily progressing without
reaching a plateau. We chose to keep her at home probably out of separation anxiety and our need to protect her.
At home we introduced
Katie to many developmental toys, read to her every day and provided lots of stimulation, exercize and physical therapy. By
age 4 we were able to allow her to begin school.
