I’ve talked to other parents, and a common theme is their child will live with them until the parent dies. This is admirable, but still requires planning. It’s important to determine what support(s) your child(ren) are receiving from you now, and who will provide those supports as you become unable to (age or death). It’s not fair, or realistic, to think these problems will solve themselves. No, they are not pleasant to think about, but imagine what your child(ren) will go through if they have to work it out alone, after you’re gone.
Where our child is going to live when they become an adult is a fear I think many parents of children with Intellectual/Developmental Disabilities have – I know it’s never far from my mind, and it led to the purchase of the house we’re now living in. I have a strong dislike about being a home-owner, I’m not a fan of doing what needs to be done to keep up with a house, nor do I like being “tied to” a property.
My son has made it very clear to me he doesn’t want roommates, and he’s become independent enough I believe he can live on his own with minimal supports (although he will require some support). Although I have nothing against Residential services offered by organizations, like the Arc, it’s clearly not what my son wants and it’s my intent to continue encouraging his self-advocacy (when it’s not going to endanger him).
I had considered an apartment or condo, but ultimately I settled on the house because of it’s proximity to a military base (he’ll retain access priveleges after I’m gone) and the fact I’m not a fan of living in either (apartment or condo). I have rented houses over the years, and enjoy the privacy. Not that it’s all about me, because ultimately it’s important my son is happy; and he’s made it clear he really likes where we are.
My son and I will be doing the self-directed route when he turns 21 and qualifies for funding. Right now it makes the most sense, because I’m currently healthy (knocks on wood) and have the time to explore what’s available and put supports in place.
If you haven’t thought through (not just about) what will happen when you’re gone; I implore you to start. No, it’s not “fun”; but, speaking for myself, it took a weight off my shoulders knowing it was one less thing I had to worry about (and let’s face it, there will never be a shortage of things to consider). Not sure where to start or just plain overwhelmed, get help.
There ARE free resources, many agencies offer information and referrals; and I believe there are parent support groups in every state (and online) – find people who have been through it already and get their advice.
If you can’t, then at least write down everything you think you need to do – one item per line. Next, take scissors and cut away the first item/line – this is what you will work on. Don’t worry about whether it’s the “right” thing, slight forward momentum is better than paralyzed indecision.