Hi, my name is Becky Lopez. My husband and I have a son, Max, who is twenty years old and has a developmental disability. Max was diagnosed as being disabled when he was one year old. He'd contracted pneumonia at 3 months of age and we've been led to believe that the acute illness may have caused brain damage. Max underwent genetic testing and MRIs that were unable to specify the root of his disability, but we knew from early testing that he probably had cerebral palsy (brain damage) and that he was cognitively impaired (mental retardation). As young parents, we didn't know exactly what that meant, but we started with all the prescribed therapies to help him get "better." These therapies were prescribed by his pediatrician or they were offered through the school system. Max was involved in speech, physical, and occupational therapies. He is able to walk with an awkward gait and he has a very friendly personality (will hug everyone), but he functions as a two year old in most respects. And like any normal two year old, he can swat, hit, and scratch when he gets overwhelmed and frightened. But Max, unlike two year olds, is over six feet tall and 200 pounds.
Max is not toilet trained and wears diapers. He needs complete supervision and care in all areas of his life. He cannot speak and has a few signs that he uses to communicate. When he was about six years old, it became apparent that he would always need someone to take care of him. I began thinking about what I wanted for Max's future. I decided (with my husband's support) that I wanted significant oversight over Max's quality of life to help him maintain as much stability and security as we could provide.
When Max was about six years old, we turned to Kalamazoo Community Mental Health and Substance Abuse Services (KCMHSAS) for help. I met with a social worker for an intake (and yes, they needed our financial and personal information because Max was a minor). Max did qualify for respite, which gave my marriage and our older son a much needed break. We had wonderful support from Family and Children Services for out of home respite and we started getting in-home help from Residential Opportunities, Inc. (ROI). These agencies were the safety net for my family. Their staff became an extended family to us. KCMHSAS also assigned a support coordinator to us and she helped to guide us through the system.
When Max was around twelve years old, he became more difficult to manage. He was aggressive towards my husband and me (I think based on some normal adolescent hormonal changes). Max's behavior became out of control and he was hospitalized for approximately one month. Medications were successfully adjusted and he returned home to us. During this time, he also qualified for a Medicaid Children's Waiver, which enabled us to have more support in the home to help care for him. (Kalamazoo Community Mental Health can help you work through whether your child is eligible for this; he/she must be under 18 years of age).
As time went on, I began thinking about the possibility of turning our family home into Max's permanent home. I know that parents don't like to think about this, but the reality is that we won't live forever. Our family is quite small and I didn't want to force responsibility for Max onto our older son when we were no longer able to care for him. I also knew that the normal transition for all children is to leave their parents and have a life of their own.
When Max was about sixteen years old, I decided to approach ROI and ask them to run the home for Max when he turned eighteen. I believed the benefit of doing this was that Max could then stay in a familiar setting (his own home) and stay in his own neighborhood.
My husband and I began looking for another place to live when Max was about sixteen. We ended up finding a place approximately 15 minutes from what would be Max's home. We began spending time there in the evenings after work and on weekends, when we had ROI services, so that Max could get used to us not being there. He got accustomed to waking up in the mornings with staff (instead of parents) helping him get out of bed, shower, and have breakfast. I realize that not everyone can financially afford what we were able to do, but I would advise parents to find some place that they can go or have their child go so that both of you get used to other people caring for your child. It also helps you get used to spending time away from your child…possibly meeting new people, getting involved in church or just enjoying hobbies that have taken a backseat while caring for your child. It is also a great opportunity to spend time with your other children.
At our IEPs and KCMHSAS treatment planning meetings, we always discussed Max's future. I asked KCMHSAS to start keeping an eye out for roommates for Max. Our family home had 4 bedrooms and 3 bathrooms − we'd remodeled the home while we lived there, planning to turn it into a supported living arrangement for Max.
When choosing a roommate, it is very important to find someone who you believe would be compatible with your child. In addition, it is helpful to feel that the roommate's family or support system consists of people you feel you can work with. We placed our home, now Max's home, under a Limited Liability Corporation (LLC) and we became landlords for our son and his roommates. We had a lawyer set up the LLC and help us develop a lease for Max's roommates and their guardians to sign.
We added a bedroom and bathroom to the downstairs area and we remodeled one bathroom to have it be safe for Max and his roommates (e.g. grab bars, shower chair, and a handheld shower head). Another nice tip, should you choose to go in this direction, is to have a separate staff bathroom and an area where the staff can set up an office.
When Max was about seventeen, I began gathering information on the various services he would qualify for when he turned eighteen. And when Max turned 18, I had to work my family's way through the Mental Health (KCMHSAS) system, Social Security Administration (SSI), Probate Court (guardianship), and the Department of Human Services (DHS) to ensure that all of Max's needs were met. I’ve documented those steps in Becky’s Guide [link to Becky’s Guide page under Resources] to help other families who may find themselves in the same position.
