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.
It’s important for a parent to stay involved, of course. It’s a big step to move an adult child with intellectual or developmental disability into their own home. How do you advise the parents get involved and stay involved?
Parents are involved in everybody’s lives. In our lives, in my life, in your life, as long as they’re here. It’s not different for people with disabilities. We see the parental role continuing regardless of where the resident lives, throughout their lives. As long as the family member is here, the parent is here. When it comes to Mainstay, we call our services a family collaborative, meaning right from the get-go we want families to know that we really embrace their involvement. They’re visiting. They’re bringing activities to other residents. There’s nothing better than seeing a parent of one of our residents meet another resident, and just that real warmth and that kind connection that they have with other people with disabilities. We really see them as an extension of our care, our team, ultimately. Certainly, when the resident’s having a hard time, we ask the families to step in, and even to really be on top of it so that we can cut that off before it turns into something that’s more serious. We really like to see a lot of involvement from the families in a lot of different ways.
Are there set hours for visiting?
We’re not really very strict about visiting hours. We want the families to come and go as they please. They have the code to the house as the responsible parties. The residents love their family members. For the most part, they’re really happy when they come to visit and they feel that pride of having their parents there. You see parents stopping by, picking them up, going out to dinner, coming back, going shopping. You see families coming and going up and down the hill or over around those different houses often.
For parents who are new to Mainstay, do you have any kind of transition for them? Do you talk with them about how this will work and what’s expected of them?
Something that brings our families and our parents a lot of peace and comfort, is we really talk about how the transition period can be slow or a quick. You’ve got some residents who walk in the door and are like, ‘Don’t call me, I’ll call you.’ And they’re very happy to be there, and their parents are like, ‘Wait, what? What about me?’ So, the families feel good, that we call it a hybrid model where you see families coming and going, and you also see the residents coming and going from the family home. Maybe they’re spending every Saturday night and going to church and out to dinner and staying overnight at their parents’ house and then coming back Sunday to be with their friends and to do an event and have dinner, and that’s kind of the routine. I think that everything’s pretty loose and I think that makes everybody feel comfortable that people really can come and go as they please.
If a family member is having a party somewhere else, and the parent wants to bring their adult child along, there’s no problem with taking them out for the day, or to take them away for the weekend if the family’s going to Florida or something like that?
Absolutely. That happens all the time. And if it’s not happening during staff hours, we’re not keeping tabs of where people are going, because we don’t have staff during the day from 8 a.m. to 2 p.m., so we’re really fully expecting the parents to be managing that time for sure every day, seven days a week. The one thing I will say is that we can’t bill MassHealth for the staff service if the person’s not in attendance and seeing the staff. So, we really are looking for folks to be there 80 to 85 percent of the time. But we can be really creative with those visits. If someone’s going to be seen in the morning on a Friday, for example, but they’re going away for the weekend, we won’t see them on Saturday but when they come back for dinner on Sunday, we’ll see them. So, they’re only missing that one day.
Is there any such thing as too much parental involvement, since we’re really talking about helping these adults to live independently?
Every once in a while, we would maybe have to bring a parent in to chat with us about cornering a staff member during a shift, or going around the manager to the staff directly to maybe ask something that’s outside of the scope of what the staff person would be doing, and putting pressure on them in that way. We had a parent that was sitting in on the weekly meeting that the residents have with an outside clinician. A few folks were like, ‘This is our meeting. We don’t want any parents here.’ We saw that come up as well. Rarely, though, do we see that. We usually have a pretty good balance of parent involvement and independence.