Susan Senator
All happy families are not alike...
All happy families are not alike...
Group Home Proposal, in Brief
I’m going to Town Hall tonight to present my vision of a group home for 3-5 young men with autism that is safe, lively, and affordable. Here is my proposal. Feel free to adapt this to your own vision. For now, don’t think about funding, think about what your kid needs. Create your vision and work from there.
Background:
Since 1991 there has been a tremendous increase in people living with autism. The CDC estimates autism occurs in 1 out of 110 births, more children than pediatric cancer, AIDS, and diabetes combined, * up from 2 in 10,000 in the 1980’s. The CDC considers the rise in autism to be a public health crisis. Furthermore, this increased population from the last two decades is now aging out of the public school system. According to a recent article in Parade Magazine, “In the next 15 years, an estimated 500,000 autistic children will graduate out of school systems in the U.S.” This factor, combined with decreased entitlement money and strained governmental budgets, and the trend to encourage independent, non-institutional living for all, is creating a need for more supported housing than in recent years. Today the outlook for individuals on the autism spectrum is often bright, due to public education and Early Intervention. Many children and then adults on the autism spectrum can live in their communities, work, and otherwise lead fulfilling lives – provided there are adequate supports.
Rationale:
According to Dr. Peter Gerhardt, Journal of Contemporary Psychotherapy, “The University of Miami/Nova Southeastern University CARD (2008) conducted an on-line survey of approximately 200 families of transition-age and adult constituents with ASD. The results indicate that 85% of adults with autism still lived with parents, siblings, or older relatives.” This would indicate that there is a huge need for affordable and adequately staffed housing to be developed for this particular population.
Mission:
To create a small, affordable group home in Xtown, MA, a town that is already diverse and accepting of all different populations, is close to Boston and many cultural attractions and opportunities. This home would be specifically geared towards young men with moderate to severe autism.
Description of Home:
1. Number of tenants varies according to funding levels: anywhere from 3-5.
a) 3 tenants and 1 live-in 24/7 caregiver, asleep overnight but on the same floor; or
b) Up to 5 tenants with rotating shifts of 24/7 staff, with ratios of: 2:5, 1-2 :4, and 1:3.
c) Caregiver would have his/her own bedroom, preferably bathroom, and some office space.
2. Tenants are expected to be out of the home 9-3, M-F in day programs or jobs, which would leave caregiver free time during the day.
3. Saturdays and Sundays tenants would have staff when they are in the “program.” Some (possibly all) might go to their family homes for part of the day on Saturday, Saturday night, and part of the day on Sunday.
4. Home must be close to a T line to encourage community outings and greater opportunities for socialization and entertainment. The home would ideally be first floor, to contain noise from any excessive pacing of these tenants. Hopefully the home would be located on a side street for greater walking safety.
Staffing:
Autism spectrum carries with it particular and unique issues and challenges, different from other developmental disorders: communication, social, behavior, sensory, and cognitive issues. We feel that it is beneficial to this population to have caregivers that are experienced with autism, particularly ABA, Applied Behavioral Analysis training, a form of behavior modification that has been proven to be a beneficial treatment for autism for several decades, according to and article in the April 4 Wall Street Journal. It makes economic and therapeutic sense for tenants with similar needs and profiles to live together, sharing trained staff. There would be a well-trained staff person on site 24/7, whenever there are people at home. It is expected that some or all tenants would go to their family homes for Saturday night.
Funding:
1. Staff: Live-in caregiver would be funded by pooled Adult Foster Care money for 3 people, or, if there is state funding available, there would be rotating shifts of staff at a 1:4 ratio.
2. House:
a) Advocates, Inc., would purchase house using a combination of bank financing and loans/grant from the state or town, private fundraising, and perhaps work with a bank interested in CRA points.
Advocates has a long, successful track record in the adult housing and supports arena. Advocates was founded in 1975 by a group of volunteers providing patient rehabilitation services on the grounds of Westborough State Hospital, Advocates is now one of the largest human services organizations in the state. Today, Advocate employs over 1000 staff members and serves 20,000 individuals at over 100 sites across Eastern and Central Massachusetts.
b) X Housing Authority would provide a Project-Based Section 8 Voucher to subsidize the mortgage at 120% fair rate
c) Tenants would pay rent to Advocates using 30% of their SSI income.
d) Any remaining purchasing cost would be provided by a one-time capital investment by a non-profit interested in supporting low-income housing for people with disabilities.
*http://www.cdc.gov/ncbddd/autism/index.html
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Good Luck. I hope it went well.
Good luck Susan! Sounds like a great plan.
Susan, I’m glad you caught last Sunday’s Parade, I hoped that you had. The article actually made mention of what you are trying to do now, parents banding together to create non-institutional living arrangements for their adult children. Frankly, I believe if we don’t do it ourselves no one will do it for us. Best wishes to you in getting this off the ground. Sounds to me like you have a very solid, well thought out plan.
Please do me this favor: many of your readers (like me) may want to help or contribute. When you get going on this mountain of a project, let us know your needs and wants. Many years ago, I had an anonymous donor donate the $300.00 so that Matthew could go to Camp Smile, a summer camp for children with autism. He was about seven at the time and wanted his twin sister to attend also, which would have meant $600.00 for both. I could afford one but not both and will never forget that someone donated a campership for Matthew. So, let me pay it forward to you by doing things large or small to help you reach this goal.
Again, while I’m a decade away from this reality, it helps so much to see it spelled out in print in a way I can’t seem to find anywhere else. Best of luck to you, and thanks (yes, bookmarked again!).
look good..best of luck
id like to see a lot more vocational training places to give our kids and adults the training they need to hold a respectable job
I am interested in this as a friend of a mom of a 20 year old lovely autistic boy and I am also a RN looking for a new project to work on. Where will your group home be? Many years ago I was the owner and Director or Nursing of a level 4 group home so perhaps I could help you in some way
Best,
Gretchen
Nat is in a house with three other roommates and staffed 24/7 by an agency we picked. The agency owns the house (through funds from the DDS) and the house manager was hired by the parents + the agency. We love the manager. Nat’s been with these guys for 2 years. So far, so good!
I am interesting in how to get started on how to get started with a group home. You know some people act like they are afraid to give you information. Please help!
Betty, first try to gather a group of families who are like-minded, and whose disabled sons or daughters are of similar need level and similarly challenged. Compare notes, have dinner together, see if you all are on the same page. Then you have to convince your Department of Developmental Services (DDS) that you have a good group ready to go. If the DDS is not cooperative, maybe try to see if a nonprofit organization wants to help you by donating funds to buy the home. Once you have the home — you may all have to pool resources and own it together as a corporation — you need to figure out how to pay staff. Have everyone in the group apply through Medicaid for AFC (Adult Foster Care). See if your children qualify. This is a way to get a live-in caregiver, who gets a stipend through the AFC program. Some people pool AFC funds and share a caregiver. Please check out autism housing pathways: http://autismhousingpathways.net/ for ideas. Bear in mind that Autism Housing Pathways and I are based in Massachusetts. Every state is different but these are ideas for starting!
I’m trying to estimate the annual cost for a private funded group home with 3 adults and 1 caretaker. We are not yet quite at that stage but want to be sure we have enough financial resources to take care of our daughter for the future. Can you please provide any ballpark figures? Not looking for anything exact just some rough estimates.
Hi Mary Ellen,
If you think a 3:1 ratio would work, you should look into Adult Foster/Adult Family Care (AFC). This is a Medicaid program. What happens is your autistic adult gets evaluated by a social worker and a nurse from a service-providing organization. What they are looking for is mostly any self-care deficits. They’d interview you, the guardian, to find out how well he can dress himself, whether he dresses appropriately or needs prompts or physical help. Same thing with feeding, bathing, safety. Remember physical assistance is the important factor in getting the stipend from AFC.
So let’s say two of the three adults qualified for some amount of AFC funding. They could pool their stipends (I think they could be anywhere from $9,000 to $18,000 a year) to pay for the caregiver. The third person could kick in some funds to make up the rest of the salary. Or perhaps give the caregiver weekends off as a way to make up for less salary.
The food and rent would be paid through SSI, so be sure your autistic adult loved one gets on SSI at 18. That’s about $700 a month. So the three roommates contribute 75% of their monthly SSI, and there you have the rent. They also would apply for Food Stamps to help with food expenses.
There are low-percentage loans available, I think, for first-time homeowners. Also, in some states (at least Massachusetts is trying to do this), there may soon be accessory apartment loans, to help homeowners build on apartments to their own homes for disabled or elderly loved ones.
The final thing to do is apply for Section 8 housing. This is low-income housing provided throughout the country. There’s a long waiting list but apply anyway.
Hope this helps.
Susan