Friday, May 13, 2011

Williams Syndrome Awareness Day 5: Where to go next?

After getting Bean's diagnosis, I had a few moments of panic. I didn't know where to go or what to do. I was relieved to learn that there are many services and programs available for people with Williams syndrome (WS) and many other special needs. This post is not intended to be an exhaustive list. I am still very new to this world and learn something new every day. Instead, I will list the resources that I have found helpful so far. Please feel free to add your suggestions in the comments section below.

The Williams Syndrome Association is by far the best and most comprehensive resource available on WS. They provide information and support to individuals affected by WS, their families, physicians and researchers. They organize events, conferences and music camps for individuals and families to interact with other individuals and families - peer interaction is essential for people affected by WS.

I have found connecting with other parents of kids with WS and other special needs to be incredibly helpful. They get it. They just know. There are two great facebook support groups and many child centered web sites have message boards and blogs focused on special needs and genetic conditions such as babycenter, cafemom, 5 minutes for mom, blogher and blogfrog, just to name a few. Here's a few other web sites that I know of but don't have a lot of experience with:,,, I am working on a list of WS family blogs and will post them as a permanent blog roll on the side of my blog.

In terms of treatment, there are various WS clinics across the country. A list can be found here. We are looking in to taking Bean to the Philly clinic in the next few months. We are fortunate to have an excellent local pediatrician and comprehensive children's hospital. 

Also, we have had Bean enrolled in early intervention (0-3 years) services since he was 8 months old. Every state is different in their qualification procedures and costs. In PA, a child has to have a diagnosis or a 25% delay and services are free regardless of income. Bean receives 2 hours of occupational therapy, 1 hour of physical therapy, 1 hour of developmental therapy and 1 hour of nutrition weekly. He will continue to receive free services from the state as he gets older but they will taper in frequency. We will likely need to supplement the free therapy with private therapy at some point. He will need annual individual education plans (IEPs) when he goes to school and we will enlist an advocate, at least the first few times, to help us navigate the process.

Medical and therapeutic services can be very expensive, even with private insurance, so financial support is critical. For any family affected by WS, it is critical that you apply for Social Security and Medicaid. Both are federal programs. Social Security is income replacement and does consider parents' income for kids under 18. Most adults with WS will qualify. If you qualify for Social Security, you automatically qualify for Medicaid. However, if you are denied Social Security, you may still qualify for medical assistance. Each state has a waiver policy that disregards parents income but each state administers the program differently. Google your state and Medicaid waiver. We were approved for medical assistance just this week. It was a long, drawn-out process but it will be worth it. Even with a great insurance policy through Husband's employer, we've been paying $300-$500 a month in uncovered medical expenses. Medicaid should fill this gap.

WS families also need to have a financial plan for the future. Consider things like who will care for your child if s/he is not able to live on her/his own. Where will s/he live and how will you pay for it. My family is just starting to learn about this but I will tell you what I know. You have to be very careful about the amount of resources - this includes estate plans, bank accounts, beneficiaries - in your child's name because it will effect his/her ability to get disability support. You need a lawyer to help you establish a special needs trust.

Some of this stuff can be very involved and complex but I hope you found this helpful. And if you aren't a WS family - or a family affected by disability - then I hope that this helped provide perspective on some of things we need to consider. This post certainly isn't exhaustive and I welcome any and all suggestions from others.


  1. You seem to have such a balanced and comprehensive view. From the perspective of a person who works in special ed, I would just suggest that you find an advocate who sees the bigger picture. One that will help you get the services Bean needs, but who also doesn't promote an automatically adversarial relationship with the school and/or district.

  2. Shan, That is a great point. It is so important that everyone is working together in Bean's best interest!!!