Doreen Cummings is the Director of Services for Mainstay Supportive Housing. This series explores different topics related to finding the right supportive housing for your loved one with intellectual or developmental disabilities. This interview has been edited for length and clarity.
How can parents know that an independent living situation such as Mainstay is right for their child?
This includes having a lot of instincts, of parents just understanding who their child is, who their loved one is, and coming to see our program or hearing about it, and understanding the level of support that we offer and to see if it’s the right match. A quick phone call, or reviewing the information that we send you via email, can really tell a lot and tell the story about what Mainstay does in our seven homes, and if it’s the right match. After that step, it would certainly be to come and see the settings and see the beautiful houses and meet our residents to see, ‘Is this is a right match? Are there peer groups here? Is there the vibe that we’re looking for?’ You know, location, access, things like that.
Routine is very important for young adults with disabilities. Their routine is really disrupted, oftentimes, when they turn 22 and they are aging out of school programs. How do you suggest that parents prepare their children for that?
Maybe disrupting the routine a little bit, I think is a piece of that. In all of our lives, to try to just kind of hold things lightly, preparing for gears to switch unexpectedly, or for unexpected things to happen. You will find though, that in our homes, when folks are moving from their family home to our home or from a residential school to our homes, people do get into their routines. They set their alarms for what they’re going to be doing; they take their meds; and they go to work; and they come home and then they have dinner with their communities; they go out on the weekends; they look forward to a game’s night or bowling or bingo or Tuesday walking club. So, there’s still a lot of routine built in, it’s just an adjustment.
Obviously moving from school to an independent setting, or not even moving, just leaving the school system and going to a different program – change is hard for everybody. Of course, it can be more difficult for people on the spectrum or for people with intellectual disabilities, but I think recognizing that we sort of all have that in common.
Having spoken with a couple of parents who have children that are residents at Mainstay, one of the things they mentioned was a transition period for them as well.
Yes, sometimes even more so. It’s interesting. We have folks that walk in our door and meet a few residents, and they’re like, ‘Will my couch fit? Mom, don’t call me, I’ll call you.’ You know, ‘Can I move in today?’ We get those often. That’s a really nice beginning. And that’s a big piece of enrollment is just, how do you react as a resident moving in? Do you want to be there? Is it a place where you can see living?
What are some life skills that you feel people should master before they’re moving into an independent living situation?
Most of the hands-on skills such as personal care. For example, using the bathroom mostly independently. Our staff certainly can cue to wash hands, make sure their clothes are appropriate before they leave, in that realm. Having the independence to keep yourself clean, I think, is a big piece. That’s for sure. I think sharing, being able to share with peers and again, to hold things lightly. I kind of come back to that often.
In a congregate setting, you’re sharing bathrooms, although there’s a multitude of bathrooms. You’re sharing the kitchen, although there’s plenty of kitchen space for everybody to share. Whatever sort of space they need for storage. Being able to live cooperatively, let things roll off you—let go of some rigidity. I feel those are big life skills that families should focus on, along with being able to do some things independently.
Safety is one example. If you’re going to be using the ride and something doesn’t feel quite right, you’d call for help. Or, being able to evacuate in a fire drill, those are important skills. Those real basics are the foundation of someone being able to live in one of our homes. And again, being able to ask for help. If someone is sick, will they say ‘I don’t feel good?’ Simple things like that, to communicate important needs.
Do you advise parents to have both ambitious and realistic goals for their children?
Yes, of course. Again, I keep going back to it. We all have really lofty goals and we all have goals that are within reach. And even another level, where these goals may be a little lofty, but they could be within reach. I think that’s where a lot of families live, where they want to see their loved ones have as many successes as they possibly can. I do caution parents to separate what their ambitions are, as opposed to their loved one’s ambitions, and to draw that line. A parent may question, ‘OK, I’d really, really like for them to clean their own room, and they just won’t do it.’ Taking away some of those barriers, letting that stuff go, having a cleaner do their room could help the situation. A parent may also question, ‘You know, I know they have it in them to use the T.’ Well, the MBTA’s RIDE is a really good backup plan. You can have both and it gives you door-to-door transportation. So, if there’s resistance or you’re worried about safety or the goal is a little too lofty, you can kind of tailor things back.
Academics, there’s such a heavy focus sometimes with families and academics which I really do feel comes secondary and it’s secondary to life skills. Getting along with others, being a kind person will take you so far when you have a disability. They’re going to hire you at the store to be the greeter if you’re willing to try and you’re nice. If you’re edgy, you know, really tense, that’s harder not only in our model, but in the world. So, kindness and some of those real basic skills, personal care, and then safety, being able to not talk to strangers and to ask for help, I would say that’s the short list.
Some experts advise creating a transition plan for children as early as middle school. Do you agree with that advice?
Yes, it’s in fact the law. The Massachusetts Chapter 688 referral plan, where at 14, folks should be starting to think about with these next eight years, how much bang we can get out of these next eight years to do some of the things that I’ve mentioned like safety, personal care, getting along with others, being able to go to the bathroom and come back to the group in the community, so you can have more options for day programs, community-based services. That’s really important.