Susan's Blog

Thursday, March 20, 2014

Alternative to Group Home: Shared Living

In Massachusetts there is a program called Shared Living, which is a good way to create an independent living set-up for your loved one with a fairly significant developmental disability. Shared Living is more of a community model, a more Self-Determined, Person-Centered model, whereas Group Homes can feel a little more isolated, perhaps more institutional, and are much more costly to sustain. Shared Living is basically a caregiver living with the person with the disability, together, in the caregiver’s apartment. The caregiver gets a stipend from which he pays rent and the disabled person contributes to the rent from his SSI check. The stipend can be adjusted using funding that the disabled person receives from the state Medicaid Waiver agency he is served by (DDS, Mass Rehab, etc.).  Sometimes people combine Section 8 low-income housing with the Shared Living model to help get an affordable apartment.

I am attaching a description of Shared Living and of the Roles and Responsibilities of the Provider (Caregiver) that I got from Advocates, Incorporated of Framingham, Massachusetts. Advocates is one of many service providers, and I particularly love them.

If you are not in Massachusetts, call your Department of Developmental Services or other state agency, or a service provider you know of, and ask about your state’s equivalent to Shared Living. Another Shared Living alternative is also Adult Foster Care, or Adult Family Care, which in Massachusetts is administered through Medicaid. Again, ask your state agencies about what Medicaid might offer, and what your loved one may qualify for. AFC is similar to Shared Living.

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17 comments

Is there yet another layer – where one with less significant delays might get, say, in home visits to make sure he or she is paying bills, taking showers, cleaning, eating? Am just starting to learn about this stuff and you seem very informed! THANK YOU<

— added by Full Spectrum Mama on Thursday, March 20, 2014 at 1:25 pm

I’m not sure at all, but that would seem even less expensive! Try looking at PCA Programs (Personal Care Assistant).

— added by Susan Senator on Thursday, March 20, 2014 at 1:33 pm

THANK YOU

— added by Full Spectrum Mama on Thursday, March 20, 2014 at 1:35 pm

This sounds like a much better option for both the individual with autism and their caregiver. Thank you!

— added by Sunday Stilwell on Saturday, March 22, 2014 at 7:48 am

Sounds great and if it’s cheaper than the residential setting then it will probably catch on. But what about socialization and isolation? Are there still group events such as movies, restaurants? I would worry the one on one setup would lead to isolation. Just a thought.

— added by Sharon jones on Sunday, March 23, 2014 at 10:52 pm

I’ve seen great shared living providers, but more not so great. In my experience, the more “eyes on” the better. As long as there is good oversight by DDS and the service provider, it can work. Unfortunately, there are times when it doesn’t work and the caregiver has almost complete control over the individual’s life. Some caregivers are wonderfully caring people and, again, from experience, when there is good family involvement and when the caregiver has a family as well, it seems to work. As a day service provider, I was part of a team that was convinced there was abuse towards a man in a shared living situation- it took a year of meetings and phone calls and DPPC calls to get him out. He was being abused and neglected and is now thriving somewhere else. And happy. Oversight is key and constant involvement with family/guardians. Isolation was in part, what allowed this to happen, so families should be very very careful and scrutinize everything. Hate to be a negative voice, but it comes from experience.

— added by Michele on Saturday, March 29, 2014 at 7:43 am

It’s true that abuse can happen in either case. Meanwhile our group home is falling apart. In group homes, staff can cycle in and out and that can be good or not. It always comes down to vigilant oversight and good people.

— added by Susan Senator on Saturday, March 29, 2014 at 7:46 am

I don’t blame you for worrying, Sharon. Isolation can happen in either setting. In a group home, it may be that the other roommates require much more of the staff’s attention, and the quiet ones get isolated — as happens with Nat at times there. The parents or guardians can never sit back and completely let go; there should always be some system of oversight and a review of schedules and activities to be sure that the person is not being isolated.

— added by Susan Senator on Saturday, March 29, 2014 at 7:48 am

They offered something like that in the town in Michigan, where I grew up. For less than $200 a month, you could be a roommate with someone with a disability. You weren’t the caregiver, per se, but you were a friend and helped out with minimal day-to-day activities. I know some people who participated and really enjoyed it.

— added by Bethany @ Puzzled No Longer on Saturday, March 29, 2014 at 10:53 am

@michele–oversight and constant involvement with the family/guardian is not the “key” in many cases. Many families are involved and even when this does occur neglect and apathy by the supervison in many of these groups homes still occur. The families are obviously not present 24/7 to give oversight. To simplify the entire problem by saying oversight is the “key” is wrong. The industry has been and always will be poorly run. It’s just the nature of the business sadly and unless more money is paid and more effort put into running group homes or shared living the options just suck..to be blunt.

— added by JG on Saturday, March 29, 2014 at 5:51 pm

I definitely believe that poor training and pay contribute greatly to failures in the group home and even Shared Living settings. But it is also true that with the right oversight and vigilance, things work out well. If we could just clone a few thousand Micheles… :-)

— added by Susan Senator on Sunday, March 30, 2014 at 9:42 am

Thanks Susan. As with everything, we are all constantly watching and supervising and vigilant. Adult services is particularly tough. Long hours, huge responsibility, and low pay. And there are so many good people who want to do the right thing. That is what keeps me, mostly, upbeat and positive. If we could just get as much help for adults as we do for children, it would go a long way. The needs are no different the day after an individual turns 22 as they were the day before. I hope things in Nat’s group home turn around for the better soon.

— added by Michele on Sunday, March 30, 2014 at 6:52 pm

Things are already better because we do have lovely staff who are, like you, the above-and-beyond a job description.

— added by Susan Senator on Sunday, March 30, 2014 at 8:32 pm

It’s nothing new but my fear for my wonderful, growing-up son is for once I am gone…Whether or not family oversight is the “key” it is a huge piece of this puzzle.
I am a teacher, and I always remind my children that teachers don’t go into it for the money (HAHA!). Same for most caregivers. But then again, even if you start with an open heart and gratitude for getting a job of any sort, the long hours and low pay can wear you down.
Love,

— added by Full Spectrum Mama on Monday, March 31, 2014 at 8:49 am

I am wondering if the staff is so lovely why so many kids have left the house and why one parent sounded strongly concerned about the restraints used on him. I’m sorry but I tend to think the parents are pretty much always right when it comes to sensing this kind of treatment. It seems like once the kids turn 22 we are forced as parents to look the other way and/or accept a certain amount of neglect and bad treatment or pull the kids out. What a scary choice.

— added by ? on Monday, March 31, 2014 at 11:26 am

the staff is lovely but not perfect. not sure who you are with the question mark name. so I’m concerned as to where you’re getting your info. only one guy has left the house. early on, three roommates left a different house. the fourth had different needs.nothing sinister is afoot. the other families are happy enough. again, nothing is perfect. this is about differing needs. I always recommended strong parental oversight and involvement, and that’s what we have. you are right in that it is scary never being sure how one’s child is feeling and having to trust while still trying to educate staff. it is a relationship w each staff person and it must be worked on with great care.letting one’s very disabled kid live an adult independent life is extremely tough but I believe it’s best for Nat. you might –rightly — feel different about your child. just try not to judge a situation you may not know about fully. thanks

— added by Susan Senator on Monday, March 31, 2014 at 11:40 am

I had to put in my 2 cents here. As a long time shared living provider I can tell you most people end up providers for a variety of reasons, but it certainly isn’t the money. We are paid worse then respite workers and are on call 24/7. We get THREE whole days off a month, including vacation time. IF the states were to treat us respectfully and give us the time off we deserve it would go a long way, but Guardians really hold the key b/c they have control over how the Medicaid Waiver is spent and the Agency’s do not let them know b/c they want their money (a big cut of the Waiver). So we end up with no time off, and the Agency’s get a big check and use it for Christmas parties we are not invited too as we are second class citizens not “employed” by the agency. Most of the SLP’s I’ve known have been wonderful and do the best they can with the limited support they are given by the Agencies and the State. It really IS up to the family/guardian to make sure BOTH the loved one and the person providing support are having their needs met or it won’t work, it can not be all one sided.

— added by long time caregiver on Tuesday, August 26, 2014 at 10:47 pm