On the Home Front

The struggle for support endured by families with special needs children.

Living life with a developmentally-delayed or disabled child is a challenge no one is prepared for. I equate the experience to the first few years as a new parent— the progress is fabulous, but there’s always a new challenge around the corner. Like when a toddler learns to walk, it’s so great, but then he’s into EVERYTHING! With a child who has developmental disabilities, however, it seems the highs and lows expected during early childhood never end.

In the beginning, when you first learn of your child’s special needs, Early Intervention (EI) is a wonder. Many people are eager and willing to help you fill your child’s need for services. Many children graduate from EI to the mainstream. Children who don’t, ages 3-5, go to their local school district’s Committee on Pre School Education (CPSE) for support and services. These children are classified as Pre Schooler with a Disability regardless of their actual diagnosis.

Many children are considered mainstream after the CPSE stage. Those children ages 5 and older who continue to need support services are referred to their local Committee on Special Education (CSE). At this stage, a classification is determined, such as autistic or speech and language impaired. In sum, there are nine categories in which no one wants to place their child. This is when the struggle for services begins as well.

Your CSE will make school placement recommendations to the local public schools. Some public schools for some issues do a wonderful job. But remember, many people with typically developing children do not consider public education an option. When your child’s Individualized Education Plan (IEP) is established, the number of related services are determined. Often the family does not agree with the CSE’s suggestions, and the private evaluator is consulted. Thus, the long and arduous wait for appointments begins and the huge financial commitment involved becomes apparent.

Let’s fast forward. Say your child is lucky enough to get a spot in a decent school, private or public. Let’s say your related services are set. The reality is that 3pm rolls around every day, and you’ve still got to get through the rest of the afternoon until bedtime, and get through the weekends, holidays and all the important milestones and occasions without the help of school staff.

Whose responsibility is it to provide support services all through these hours? Many disabled children become the focus of the whole family. For those whose marriages stay together, one parent usually has to reduce the workload to coordinate all the scheduling, especially for the special needs child. If there are siblings, they need attention too.

How do you find quality childcare that’s appropriate and can address the continual challenges that come with having a child with developmental disabilities? Quality childcare is not so easy to find for a typically developing, school-age child. Imagine the hardship of finding quality care for both camps. Why is it that the abundance of support and services offered when your developmentally-disabled child is young diminishes as he grows older? In most cases, the need for support and services is greater when your child ages, and it’s critical to offer him a chance to continue to progress and better assimilate in social settings.

Children with special needs should be home with their families and be involved in the community. We can never go back to the days of Willowbrook. However, we need to be realistic. The school day does not offer enough support for families caring for these children. Luckily, the many parents of now disabled adults have advocated for Family Support Services and Medicaid Waiver Services for this specific situation. These families are now leading the way to ensure that their now adult children’s needs are met in group homes, through employment opportunities and at-day habilitation.

I urge families of disabled children and adults to contact their local OMRDD. Find out what family support services they are eligible for, then sign up for them and use them. If the services are good, tell others. If the services are not, demand change.

My dream: For all kids with developmental disabilities to have great school placement. (I also wish the school days were a bit longer and there was a lot less vacation time!) After school, it would be great for these same kids to have a variety of services appropriate for their individual needs. From recreation and socialization, to art and music, all programs should be provided in a nice setting with caring, trained staff members, Monday through Friday, from 3-6pm. In an ideal world, these children would then be transported home to their families to have dinner, do their homework and go to sleep. In that home, it would be great to have a trained person to assist the family with daily living skills.

Each child with a disability should be evaluated to determine his individual needs. For school-age children, we need the same quality and emphasis on care that is provided at the Early Intervention and CPSE stage. Some children are not candidates for the mainstream. Going back to residential care is not the answer. I want all these families who are trying so hard to care for these kids at home to get the support they need. There’s money and services earmarked for this support. We need to get the word out, celebrate the things that work and implement change to the things that don’t work. Together, it can be done.