Caring for a child with disabilities can become quite expensive, even if you have good
insurance, and it can quickly sap your savings. If you have a low enough income you
may qualify for Disability, also known as SSI and/or Medicaid. Even if you do have
a good income and private insurance it is still possible to get help. Almost every state
has something called a Medicaid Waiver program. These are programs that provide Medicaid
benefits based on a child's needs rather than on income because they realize that
medical expenses are often beyond the reach of even those with really good jobs.
Medicaid can pay for co-pays,
insurance premiums and respite care along with other things. Each state runs their own
Medicaid program so benefits will differ depending on where you live, but you should
definitely check these programs out. To find out what is available in your area, contact
your local Department of Social Services - usually listed in the County Government section
of the phone book.
Early Intervention Services
It used to be that the focus of care for developmentally delayed
or disabled children was to "make them comfortable" and to treat
any medical symptoms they might have. It wasn't that long ago
that parents were encouraged to place any special needs child
in an institution. In the 1970's things began to change after
a number of lawsuits were filed in federal courts to push for
the rights of the disabled and to bring them back into their
homes. As the children were moved from institutions back into their homes,
it
was found that many who were labeled hopeless were in fact quite
capable of a great deal more than anyone had previously thought.
In 1986 Congress passed the Individuals with Disabilities Education
Act, or IDEA and this law was reauthorized with some changes in 2004.
Part C of IDEA describes the Program for Infants and Toddlers with
Disabilities - otherwise known as Early Intervention.
The principle behind Early Intervention is that if developmental
delays are addressed early in life their effects can be minimized.
By providing these children with physical, occupational and speech
therapy - along with special education at the preschool level - the
quality of life for these children and their families have vastly improved.
Early Intervention is a federally mandated program that is run by the
individual states. Each state runs their program a bit differently, but
they all have standards that they have to meet. You can read the
specifics on the U.S. Department of Education website.
The basics are that each state must implement an Early Intervention system,
they must provide services to all developmentally delayed infants and
toddlers without regard to income
and they must do so in a timely fashion. The services must be given
in a child's "natural environment", which usually means the home.
The types of services
usually include
physical, occupational and speech therapy. There may be other services
depending on where you live.
Early Intervention services are often covered by private insurance or
Medicaid, but if you do not have these then the states (with some help
from federal money as well) must pay for the services. Someone finally
figured out that it costs a lot less to take care of these things early
on than it does to provide a lifetime of support.
Each state has their own specific setup, but the general process is that
you or your doctor makes a "referral", meaning a request for services.
The Early Intervention program then sends someone out to evaluate your
child and his or her needs. If it is determined that your child meets the
criteria for a developmental delay, or is at significant risk for delay
in the case of a newborn, then an IFSP is created. An IFSP is an
Individualized Family Service Plan and it is required by federal law.
The IFSP constitutes a legal contract between your family and the state
for the services that are to be provided. The IFSP will contain the
goals for the child and the plan (such as physical or occupations or
speech therapy) to achieve those goals. If the Early Intervention
program cannot provide the services in the IFSP, then there are
provisions for arbitration and legal help to help you get those services.
You will be assigned a coordinator that will keep the IFSP up to
date with the goals that are being met and setting new ones as your child
grows.
Early Intervention programs are provided from birth to age three. After
three years old the children are transitioned into the school system
where they get an IEP (Individualized Education Plan) rather than
an IFSP.
Having said all of these glorious things about the EI program I also feel that it is
only fair, given the current state of our economy, to say that not all EI programs are
created equally. Sadly budget cuts have often led to services being slashed across the
board in many areas. Here in Virginia they have tried to use a "Parent Education" philosophy
to justify what they are doing so that they can appear to be in compliance with federal law.
Basically they say that a "medical model" is to have therapists come in and do all of the
work with the children and often to provide therapy several times a week. The "parent education"
model is to have a therapist come in once or twice a month and provide suggestions to the
parents and show them how to do the therapy. It's a great way to cut costs and it is being
adopted by more and more states. The upshot of this is that the children are receiving almost
no therapy from people who have spent up to 8 years in school learning how to do it and instead
the parents have to learn all of that in a few 30 minute sessions here and there. In the end
we had to switch to therapy through private insurance to get anywhere. You should certainly
meet with the Early Intervention people who know all of the ropes and can connect you with
other services you might never even have heard of, but just be prepared for either a fight
or to have to go elsewhere if you live in an area where the EI program has been cut so harshly.
Where to Find Help in Your Area
Each of the states implements their Early Intervention program in the
way that they think best serves their residents. As such there are
50 different programs and they can name their program anything they
want to, as long as it follows the rules found in Part C of IDEA.
Below are links to the programs in each of the 50 states. If you
find any dead links, or have a better one than is listed below,
please email me by clicking here.
Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.
