When your child was a baby, you had to learn all about early intervention, what your healthcare insurance would pay for and who to turn to for services your child and family needed. You advocated for your child’s needs and had to fight on occasion to get people to listen to you.
Now that your child is an adult, what do you need to help you? Some parents and caretakers, as they age, can’t do as much as they used to or would like to — both for themselves and for their adult children. Cleaning the house becomes more difficult, especially if they have stairs. Cooking dinner every night becomes a chore. Having the energy to keep your child happy and active in community-based programs can be overwhelming.
Your friends, family, doctors, nurses or social workers may tell you to get help. This can be frustrating because you never needed it before, so why now? Maybe it is because you really do need it now.
Asking for and accepting help is really hard to do. Deciding what kind of assistance you would really benefit from is another big issue. Do you want your adult child to continue living with you? Is it time to have a meeting with your other children, close relatives or friends? Are you willing to have someone come into your home to help with the housework, meal preparation or caring for your adult child with trisomy 21? If you are, who will pay for it? Will you like the person?
There are so many things to think about in order to decide what your next steps will be. There is no recipe for what works for everyone. It is not as simple as when your baby with T21 was referred to early intervention.
What has been helpful for some families is to work with their supports coordinator. In Pennsylvania, it is through the Office of Developmental Programs (ODP). In New Jersey, it is through the Division of Developmental Disabilities (DDD).
In addition, health insurance managed care organizations (such as Keystone First) have Special Needs Unit case managers who can help you weigh some of these options and determine what services may be paid for by Medicaid and what may be paid for through Medicare.
For families that are considering alternative living arrangements for their loved one with T21, three systems need to work together; they are ODP/DDD, the healthcare insurance provider and the Office of Aging in the county where the family lives.
While questions and systems may seem overwhelming and confusing, we have scheduled an informational session for families and caregivers of adults with T21 on Saturday, Oct. 26, 2013. We will discuss all of these issues and more. Please join us.
— Contributed by Symme Trachtenberg, MSW, CHOP Trisomy 21 Program; and Sally Miller and Judy Weisman, parents of adults with trisomy 21