Susan's Blog

Wednesday, November 5, 2014

Massachusetts: DDS changing Medicaid-based rules

If you live in Massachusetts near Wellesley, or Westfield, PLEASE consider attending this hearing! Maybe work it out so that your autistic adult family member/loved one attends with you. DDS et al. need to have AUTISM IN THEIR FACE. This may help them get it. Wear RED!!!

If you have considered creating or settling your autistic loved one on a farm, for example, you can forget about that if these rules go through.

BULLETIN From Cathy Boyle, of Autism Housing Pathways:
This Thursday 11/5/14, at 6 p.m. there will be a public hearing at MassBay Community College, 50 Oakland Street, Wellesley, Massachusetts.

Westfield State University campus, 577 Western Avenue, Westfield, on November 12, 2014 at 10:30 a.m.

MassHealth will be hearing public comment on its draft transition plan on Medicaid’s new rule on home and community based settings. While this sounds complex and technical, the bottom line is that the final plan will determine where you can use Medicaid funds to pay for your adult family member’s services. Even if your child is not yet an adult, these changes are likely to be in effect for a generation. As of right now the draft plan means people with DDS funding will NOT be able to be used in:

SELF-CONTAINED, QUIET SETTINGS REMOVED FROM THE COMMUNITY (* Settings that have limited, if any, interaction with the broader community);
* Settings that use or authorize restrictions that are used in institutional settings;
* FARMSTEADS or disability-specific farm community;
* GATED or SECURED communities for people with disabilities;
* Settings that are part of or ADJACENT TO A RESIDENTIAL SCHOOL;
* Multiple settings co-located and operationally-related that congregate a large number of people with disabilities for significant shared programming and staff;
* Multiple settings on a single site or in close proximity (see directly above)

“DDS may license or fund new homes in the community that are duplexes, “triple-deckers”, or free standing homes that are either side by side or adjacent or on bordering lots only upon the review and approval of the regional director, the assistant commissioner for field operations and the assistant commissioner for quality management. The capacity in these settings may not exceed four (4) individuals on each side of a duplex, in each unit of a triple decker or in each free standing home located on adjacent lots.”

The new Medicaid rule also applies to day services, and may result in severely restricting the use of center-based day programming. Individuals who cannot participate in the community 30 hours a week, either in competitive employment or recreational activities, may find themselves at home much of the day. While the current draft transition plan refers only to residential services, we have been told testimony regarding day services is also appropriate at the hearing.

If you are concerned by any of the above please come to the hearing. We ask that you wear red.

To learn more, please go to


Is there a reason given for this new rule? It seems to target the most severely disabled persons.

— added by Lisa C on Wednesday, November 5, 2014 at 5:31 pm

Just one thing: it’s not a rule yet, they are taking public feedback this month. But yes, it does seem to target the most severely disabled persons, and that’s likely because their services cost the most, and controlling things more may mean reduced cost — in the short run, however. I think that in the long run we as a society will pay dearly if we force one size — inclusion in the regular community — on people who need more support or need other sorts of arrangements.

— added by Susan Senator on Wednesday, November 5, 2014 at 5:58 pm

The irony is, they are using OUR language against us. We’ve long said we wanted the least restrictive environment, we wanted our people integrated into the community, we wanted real employment opportunities, etc. Of course, what they are proposing is nothing like what we really meant, we always understood that the least restrictive environment did not mean the most free.

Similar things are afoot here in Ohio. Your post makes me wonder about what is going on in the other 48 states.

— added by Another mom on Thursday, November 6, 2014 at 8:07 am

Barbara, exactly. They have turned inclusion on its head, upside down, and our guys are going to fall.

— added by Susan Senator on Thursday, November 6, 2014 at 8:11 am

One size does not fit all. Appropriate statement and appropriate message. For some people, it is less restrictive to live with their disabled peers, just as we live with our peers. It give them the confidence to spend time in the community, learning an growing. It’s okay that there are things some people can’t do. It’s the same way with everyone in the world. Plunk someone in a space and they will be “normal”. which really is just an average of all of us. Does not work that way. How are agencies to serve people if they can’t work with them in the same place? Ughhhh!

— added by Michele on Friday, November 7, 2014 at 5:51 pm

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