Even under the best of circumstances, having a child in your life brings new challenges, stressors and struggles. Add disability to the picture and families may feel overwhelmed and unprepared. Family support is critical.
What is family support? We can’t give you a clear definition, because it will look different for every family. It’s doing whatever it takes to support a family to care for their child with disabilities and allow that child to grow up in a healthy family. Family support can come from “natural supports” as well as more “formal supports.” What’s the difference?
Natural supports are important for every family; disability only increases the need for these kinds of supports. It’s the kind of support you would get from people in your life if disability were not a part of the picture. It’s friends, neighbors, extended family, people from your church, the lady at the local grocery store, the coach at the elementary school, the dance teacher down the street, a friend of a friend…It’s the people who come in and out of our lives naturally and to whom we would turn for support under everyday circumstances. Sometimes it’s harder to ask for help when disability is involved, but it need not be – many of those same natural supports are willing to be there for you in spite of the disability and they just need to be invited. There may be other natural supports just waiting to be discovered. Possible resources for natural supports in your community can be found at the end of this article.
Sometimes, though, a more formal system of supports is required. Perhaps local agencies, civic organizations, non-profits and/or faith-based organizations can help. You’ll have to be a detective and ask, ask, ask. Other resources can be found through the state of Texas. A variety of programs are administered by the state of Texas to support the long-term care needs of children with disabilities. These include Medicaid, Medicaid waiver programs or other community care programs, as well as the local school district. Possible resources for these kinds of supports can be found at the end of this article.
What Do Parents Need to Know?
There are no easy solutions to help you find the support you need. Don’t sit there waiting and expecting someone to knock on your door with the answers; you’ll have to get out there and find them yourself. And there’s no time to lose! While the state of Texas has a variety of programs available, there are usually waiting lists for the Medicaid Waiver programs and the wait can be long. If your child’s disability is significant and likely to require more formal supports,place your child’s name on the waiting lists as soon as possible. By the way, the state of Texas calls these lists“interest lists” rather than waiting lists. You can find more information regarding the Medicaid Waiver programs (find contact info for the waiting lists on page 14) here: Family Resource Guide. You can also find information on the waiting lists (and the application process) here: Texas Health & Human Services
Parenting is hard work. Disability can make it harder. Finding the right kinds of supports, natural and/or formal supports, can make it easier to be the kind of parent you want to be and have the kind of family life you want to have. Get started!
The Texas Center for Disability Studies offers their “Family Resource Guide: Understanding Family Support and Opening Doors to the Future”. You can download the Family Resource Guide via a link at the bottom of the web page. The Guide includes specific information about the various Medicaid Waiver programs (page 14) available in Texas and how to place a name on the waiting list. THIS SHOULD BE YOUR FIRST STEP!
Texas Parent to Parent connects parents and families caring for children with disabilities with other parents, parent supports groups or other organizations in your area.
Texas 211 provides information on services in your area.
United Way – state website can provides a link for locating local United Way agencies, which can help you locate local services.
Don’t forget to look in your own backyard – your neighbors, friends, co-workers, your church, local YMCA, Boy Scouts, Girl Scouts, Camp Fire, Boys’ Club, Girls’ Club, Little League, civic organizations (Rotary, Lions Club, Ambucs, Ambucs Too), etc etc etc! Organizations need NOT be disability oriented in order to help.