Susan's Blog

Saturday, September 29, 2012

Building a Home: How to Start

I went to the MFOFC (Massachusetts Families Organizing for Change) Conference today, which was all about building a home for your loved one with autism or intellectual disabilities.  I gave a workshop with Jeff Keilson, my go-to guy for Autism Adulthood Advocacy, who is also a friend and colleague from Advocates, Inc., our service provider for Nat. Our workshop was all about the pitfalls of starting a group home. Jeff, who is a former Deputy Commissioner of the Department of Developmental Services in Massachusetts, gave the context for this semi-new model of person-centered residential planning, and I gave the specific scenarios I have experienced along that road. Jeff and I are considering making this talk a template for future similar talks, so that we can offer this workshop everywhere.

The most frequent questions I heard as both a presenter and a parent participant were, “Where do you start?”, “Who do I call first?”, and “Where do I get more information on the completion of the building?” The answers to the two questions are intertwined; you start by making calls — and going to conferences to learn and network. You call either a local Arc, Autism Support Center, or even the Department of Developmental Services (DDS) or Executive Office of Health and Human Services, EOHHS. You can call a service provider like mine, Advocates. You can call a friend who is in the know. You can arrange to have coffee with someone like Jeff, and ask your questions. The most important thing to remember is, whomever you call and wherever you start, start early.

I took notes of Jeff’s first talk, in the morning. His talk was called “The Big Picture,” but to tell you the truth, it was actually a very detailed picture of a very big system. Jeff emphasized this and made the excellent point that we in Massachusetts (and probably all over the country) need one definite point of entry into the system. In fact, the chief recommendation made by the Massachusetts Autism Commission was that the client ought to be able to call only one person to figure out where to go for services, and what to do first, next, and so on.

Jeff talked a lot about MassHealth, which is the Massachusetts administration agency for Medicaid. MassHealth has entitlement programs through Medicaid funding, and these are the only entitlements that exist for intellectually disabled adults — a very different situation from the world of IDEA, the public education years. After the age of 18, I believe, a person can apply for SSI if they have a documented disability, and once they are found eligible for that, they become eligible for MassHealth.

Why is having Medicaid-funded MassHealth so important?  Because of programs like PCA (Personal Care Attendant) and AFC (Adult Foster Care). These are programs your child may qualify for if he is not eligible for state services. (State services are often measured by the archaic IQ test, and so many with autism do not qualify, even though they definitely could use some supports.)

AFC  is in-home or out-of-home support for people 16 and over. Recently the program was modernized a bit, so that now you can pay a non-guardian parent or citizen a stipend, from $8-16K annually. (The only caveat here is that you cannot be the guardian and the caregiver. So before you make the guardian decision, think about the AFC regulation.) The Out-of-Home placement with live-in caregiver is a very creative way to provide independent housing for your disabled loved one, along with a support staff. It is tricky finding that special person who is happy to be a live-in caregiver, but they are out there.  The other important Medicaid program is PCA. Jeff told us that PCA is a good program if you get allotted 20 hours; if you’re eligible for with only 10 hours of PCA, however, you’re better of with AFC. AFC creates more flexibility with the money, too.


And, coming in the near future: the ICO (Integrated Care Organization).  This is a new system being developed here in Massachusetts for people 21-64 with Medicaid and Medicare. These are health plans that would manage all the Medicaid and Medicare money for a client. If you have a son or daughter in a program funded by MassHealth, and they have Medicaid and Medicare, you will be able to enroll in a health plan that would manage this, rather than the state managing everything. The ICO will be managing the day program, the AFC, etc.  One-stop-shopping for the clients. Fewer bureaucratic headaches for the families.

I also learned that most people’s primary major health plans have “case management.” Call the number on the back of card, and tell them about the disability. They will use their healthcare assessment, and then offer all the services that you may be eligible for. They will have a list of such items!  So there is another place to call: your own insurance company.

I know I’ve blogged about most of this subject of Autism Adulthood funding streams and programs before, but it is fresh in my mind from today, and it all bears repeating. Autism Adulthood has limited funding and confusing bureaucracies to deal with, but once you start to understand all the funding streams and the requirements involved, it is not so bad. With perseverance and patience (with the agencies and with yourself) you will be able to figure out some form of support for your disabled child. But you have to start learning about it now.



We are just on the verge of looking at out-of-home placements for our 19-year-old son. Although we live in Michigan, I crave the kind of information you are sharing!

— added by Susan Miles on Saturday, September 29, 2012 at 7:48 pm

Katherine turned 14 recently and I’ve got a growing pit in my stomach as she gets closer and closer to becoming an adult. This information does bear repeating…often…for those like me!! I’d be interested in your future talks (you mentioned creating a template for future talks)—I’d love to attend 1,2, 3,….. !!
As always, THANK YOU!

— added by Sarah Conley on Sunday, September 30, 2012 at 6:57 am

It’s scary. My brother who is 52 is in a state run group home. I am his guardian and it is acceptable but not really too good. He’s been there a really long time. It’s an improvement over the institution he lived in before.

My son is 28 and very similar to my brother. He is at home and I have lots of help and he goes to a day program during the day. Every time I think of living situations, I shudder.. especially given the battles I go through with my brother.


— added by Gayle on Monday, October 1, 2012 at 3:50 pm