Independent living for my parents and handicapped sister. Any ideas?

There are some 55 and older living communities that allow a handicapped child to reside with their parents. I believe the parents would have to have legal guardianship of the handicapped adult child. I know the state I live has communities that allow for this situation. Considering your parents age, it would be a good idea to start looking into a group home for your sister.

I would like to second what stevensmom has said. Find out if your sister is covered by a Medicaid waiver program and if not, find out if there is a waiting list in your state and get her on the list. If she attends any type of day programming, etc. the folks there can help you. I have a 23 year old son who has autism and with his Medicaid waiver program he will be transitioning soon to live in a house we own with a foster care companion. We live in Texas but there are different community living options under these waiver programs in the different states. As the mother of a child with a disability, I know how emotionally difficult this is for all involved, particularly your parents. Even so, it will probably be better for your sister to be settled in a situation that addresses her long term needs while your parents are still living. As to finding a place for all three, there may be some private communities for persons with disabilities that may accept your parents too. I know of a community outside of Houston (where I live) called Brookwood and the grandparents of one of the residents built a house on the grounds, work as volunteers there and plan to age in place there. These private communities can be quite costly though.

You are absolutely correct, jeannegibbs!

I had a cousin about 10 years older than I. He had mild MR and was legally blind. My aunt and uncle kept him home and protected all their lives. He grew up in the late 50s when children with disabilities didn't have the right to a free, appropriate education. When they moved to Independent Living, he moved with them. One day, my uncle died of a heart attack. About 6 months later, my aunt was found dead on her kitchen floor. My cousin, who was healthy and about 55 years old, ended up dying less than a year later, probably because of a broken heart. He had been taken care of all of his life and had no way to learn how to live on his own.

I adopted a son with Down Syndrome when he was 12. Everyone was happy for me but a few wise friends told me that when he graduated from school, he would need to move out into his own home. When the time came, I found him a 24 HCBS waiver home with 2 wonderful roommates and great staff. I bawled my eyes out after taking him over there the first time (and still struggle with not having him with me). That was over a year ago. Now he tells me when he wants to come over for a night, I talk with him daily, and see him at least once a week. He has friends, he has a job (sheltered workshop). He gets a (teeny-tiny) paycheck. He has activities on a regular basis to get out into the community. He loves his life!

If it is not too hard, could you find a similar place for your sister? You do have to think ahead for the time when she will not be able to live with your parents. Depending on her level of disability, there are different levels of care, from hourly care to 24/7, which my son receives. Do take time finding the right agency and the right placement for her, but there are so many opportunities for individuals with disabilities today that I think it would be worth the work to get her on a waiver program (if she is not already) and get her settled into a great place. She hopefully has many happy years ahead!

Contact the agency in your area that deals with your sister's handicap. They should be able to direct you to some options. Does your sister have a caseworker? That would be a great contact, too.

What is the plan for your sister when your parents die, or are no longer able to take care of her? Would they feel good about seeing her settled into a new situation now, while they could visit her and ease her transition? Would she be better off adjusting to a new environment now instead of being forced to deal with that when she is also mourning for her parents?

I am just raising the possibility that at this point finding a place for the three of them might not be the best long-term solution. Obviously I don't know the details of the situation so this is just a suggestion to think about.