School ends and then....
It is time to begin exploring the options for your child once school has ended. Residential and vocational services may or may not be fully provided by your state’s programs. It is important to focus on the cash flow to fund the supplemental needs not covered by public resources or services, such as transportation, special health and hygiene requirements, recreation, advocacy, or special foods and therapies. In many cases, residential placement and transportation is limited.
Today, primarily due to lack of public funding and a desire for greater control, parents are seeking alternatives to relying upon the government to provide full residential supports. By utilizing both public resources and their personal income and savings, many families are developing creative residential models focused on quality and care.
Housing and Transition Planning Stories
When our daughter Briana was 16 years old, we were invited to an open house of a home for individuals with disabilities. We initially did not think that we would benefit by attending because Briana was only 16, and we never envisioned her living outside our home. We were amazed to see that residents who had even more challenges than Briana were able to live on their own. It was a great experience to see how happy the residents were. Our views on Briana’s abilities and living options definitely changed.
My son is now 27; when he was 22, I was not ready for him to move out of our house. His brothers and sisters were at home, so he was part of the crowd when all their friends were at our house. When Steven was younger, and even up until he was 22, we envisioned that he, too, would like to live in his own house or apartment. However, that has changed because, at least up until now, we have not found the right situation for him. Now, the other children have been out of the house for more than 10 years, and we feel we need help. We are tired and could use a break. When we were planning for our retirement years, we never planned to have to pay for his quality of life as well as our own. I wish that we had planned better.
When my parents died 3 years ago, my sister needed limited supports and was happy living in a residence with two roommates. For years, things were going very smoothly, and her supplemental expenses were very low. In fact, the only additional expenses she had were from her hobby of collecting hats—which she loved to do. When one roommate suddenly became ill and passed away, Brooke went into a period of depression. Because Brooke’s communication skills were limited, it was very difficult to detect how great the emotional distress was for her. She then had multiple hospitalizations for depression. But due to insurance regulations, she could not stay in the hospital for any extended length of time. This resulted in our having to change her living situation because she now needed 24-hour supervision. Although our state provided for Brooke’s residential placement, it became a challenge to be able to maintain her original living situation. We had to hire a disability consultant to help us obtain the additional services Brooke needed. Fortunately, the money my parents left in her SNT was available for us to use to hire the consultant. We developed a plan that involved our paying for a graduate student who was studying to be a social worker to be with my sister, to give her the supplemental supports that we felt she needed. Although the state was willing to provide for her basic needs, we felt that we should do better than that for her.
