From the time my oldest son was diagnosed with autism at 22 months of age, I wondered, and feared, what adulthood would be like for him. Would he go to college? Would he have a job? And most importantly, would he be able to take care of himself and live on his own? If not, who would take care of him and would they, could they, care for him well?
When our second child, also a son, was diagnosed with autism at 3 years old, I had a lot on my hands, but in the back of my mind was always the worry about where they would live and who would care for them when my husband and I were gone.
My sons are now 26 and 24 years old and they have lived in their own home, with one other roommate, and full-time care for six years. While I didn’t plan for them to move out at such a relatively young age, I did consciously build the expectation in them from a young age that some day they would have their own home. While enduring a very traumatic puberty, which included the development of a near fatal seizure disorder, my younger son shared that his dream was to “move out and have my own house.” I decided to make it happen. My goal was to keep him with us until at least age 18, so I had roughly three years to make a long-term supported housing plan, and implement it. Remember, it will take time to make a successful plan.
As a parent of a child with a disability you learn to develop an individualized educational plan (IEP) containing present levels of performance, goals and objectives year after year for school. In Michigan and many other states, an individual plan of service (IPOS) is created using the process of person-centered planning (PCP). Life-planning and service planning come together with a focus on the individual’s desires, interests, needs and choices about what they want their life to be. Too often family members and/or those supporting a person with a disability forget to ask them what their dreams are. This process revolves around those dreams.
The IPOS will determine what services, goals, and objectives community mental health services and Medicaid funds will support for an eligible individual. Think about adding goals that will assist your son or daughter get ready for independent housing including gaining self-care skills, understanding and performing chores, and navigating public transportation.
You can also create a long-term housing plan for your adult son or daughter with a disability using the PCP process. I would urge all families to make a long-term housing plan for their sons or daughters with disabilities, especially as they approach adulthood. It can be implemented when it becomes necessary, or when you desire, and can be changed or added to as appropriate. Get started one step at a time!
Future posts will discuss various steps and resources to be used in creating a long-term housing plan.