Susan's Blog

Sunday, November 23, 2014

Fragile Talking

Warm sunny Sunday

Come sit, my darling

You are yellow and blue but not afraid, not sad

Together we dent the couch, sinking in

You’re so close, I breathe you. My heart’s a balloon, filling, stretching.

Pick who you want to talk to

I ask you to give us some words, if you can. Are they light inside you today, effervescing at the top of your throat?

“Yes,” soft and fragile, floats like a bubble.

Finger crooked over the letters, darting: where are they? Don’t lose the word, quick. I’m breathless waiting for the connection.

Fingertip to key,

Words to me.


Thursday, November 6, 2014

Self-Determination Should Precede Integration

“We should all have equal rights. We need a place to live, too. Not just typical people…any number of people that you wish.” A developmentally disabled client of Jewish Family and Children’s Services, November 6, 2014.

“I love my house. Don’t shut it down.” Another young man with a developmental disability, I did not hear where he was from.

Integration, and Community First Vs. Self-Determination is the issue at hand. Does one-size ever fit all?

CMS, Centers for Medicare and Medicaid Services, has come out with new rules related to home and community- based settings: “Full access to community living, integrated settings.”  Department of Developmental Services in Massachusetts is proposing to go further, beyond the new CMS rules and restrictions on community residences and DayHab. They are having two hearings, one was tonight, November 6, the other is November 12. (Send your email testimonies to for comments by November 15)
Tonight there was a gathering of perhaps 150 people at Mass Bay Community College in Wellesley, Massachusetts for the HCBS Medicaid/DDS public hearing. Many of these giving testimony were family members, residential home staff, and self-advocates. Many great points were raised, for example (please forgive my paraphrasing, I tried my best to follow their exact words). I am not doing justice to the passion and eloquence and variety of great points raised, I’ll just do my best to pull out points that jumped out at me:

First there was Steven, from Stoughton, stepfather to M, 44, developmentally delayed, lived at New England Village since 1993. There are over 150 ppl there. Full time nursing staff. Life skills, pool, wellness center, arts&crafts, helps other residents, takes cooking lessons. Friendships develop betw residents at diff houses and outside of NE Village. “Working is what she does best.” His wife is always in the loop with regard to every aspect of Michele’s care. Michele has learned about the cycles of life, even death. (sat with resident who had Altzheimer’s in his last hours).

John of Berkshire Hills Music Academy said, “A shame to judge a community by just one standard.” “Community should never be defined as a fixed location.” “Don’t assume that just because it is a community setting doesn’t mean it is unsafe.” Used example of those many in Assisted Living. “What if we take that choice from them?”

Paul, brother of M, who is as he put it, “severely retarded… Couldn’t take a bus anyplace. We had an objective: to find a happy healthy place for her to grow.” Has been in New England Village for 42 years. She has grown: library card, white water rafting, kayaking, shopping with others…It is a village, not a home, not an institution. You must look at each person individually, you come out and look at these establishments, see how the people react.

Barry: Chair of Board, NE Village. Created as an answer to the de-institutionalization. “Speak to understand what the person wants and help them achieve their goals.”

Kathleen, A’s sister, also NE Village. A is very involved…picked out her own room colors, goes to the animal shelter.” Later, A spoke, too.

Another, a mom of a 22 year old at an Amigo group home. “He receives prompts and reinforcers to help him through his day which could be defined as coercion inadvertently.” “Taking away the ability to use restraints judiciously could result in dire consequences,” And “What will be the fallout in terms of disability sensitivity  when videos from community are released into the media?” Also, “Forcing Timmy into the community for 30 hours would cause him serious distress.”

M — a client who spoke for herself. She lives in “The Yellow House” since 2010 w 6 roommates. “See how awesome our home is,” she said proudly.

A sister, guardian of a 63 yo. Lives in home run by Charles River Arc, one of three houses on a cul-de-sace. Less than 2 miles from Needham Center. No evidence that these three homes are contrary to the goals of HCBS. “There is no way that my sister would choose to relocate.”

Stephanie B asked: “Are we responding to the integration mandate or the person centered choices first?” Person-centered Planning will lead to integration!!”

J, who lives in The Yellow House: “I want to continue living with my six friends. Thank you.”

Another, M, lives with eight housemates. “That is a better number to live with than just being with five…We plan meals together, we enjoy talking to each other. To me living in a Shared Living apartment helps me to grow up and live away from my parents.”

Irene, I’s mom. Isaac is autistic, 26, served by Amigo. About DayHab: in school, they trained Isaac in voc tasks. He needed a one-to-one. He never got any training doing these things in the community. The school deemed him not ready. At 22, no money for a one-to-one job coach for him. Too difficult to fade out the job coach. So, what good is it to have a person do a job when you need another person right next to that person to make sure the job gets done? So Isaac is in DayHab, scheduled day. He has more opportunity than when he was in a program that exercised voc skills !

One woman with a disability spoke of the need to push for integration, to give people chances to grow. “Community First,” was what she said — so she is of a different mind from the others who spoke before.

Gary Blumenthal, ADDP, told DDS, “We’re all here because you all have done such a good job!” We ask that the Dept of MassHealth not Pre-judge CMS. CMS will hold you to your word. We ask that you work with the providers that will be part of the Joint Committee of DDS and ADDP to determine in a manner that is outcomes-based that looks at the total experience of the individual with the disability and not just on their location. We ask that we have a chance to see what amendments you take before it goes to CMS.

Jude, an autism mom, and J, her son: “J is not an adult but he will be soon.” Crying, she thanked a lot of Jack’s friends for coming. “Important that our loved ones with autism be seen and heard.” Jude mentioned that she also works for Autism Speaks when CMS looked at these rules, Autism Speaks “expressed concerns about rules that restrict where people live.”

A, who is from Sage Crossing. Her son told her he always wanted to live on a farm. He wants to work the land. Under the proposed options, he won’t have that possibility.

Another couple: “What is the number five? …Why should the folks that live in the over-five-people homes, their family be limited to just three or four others?”

Cheryl C, an autism mom: “The broader community is not inviting my son to come to their house. No one has the right to decide that people with disabilities aren’t capable of being friends and supportive of each other. And that they must be in a public place to be fulfilled. I’m sorry, but that’s crap.”

Cathy B, an autism mom: “Overwhelming sensory issues limit the time some individuals with autism can spend in the community.”

My feeling while listening was: Forget the fact that there are so many family members and staff testifying about the need for self-determination, not tenant number-based or location-based restrictions for happy, healthy residences for the developmentally disabled. BUT the fact that all of these self-advocates —  intellectually disabled people could come here and testify themselves — doesn’t that say anything about how things have changed since the closing of the institutions?  There is so much more independence, people working, living worthwhile lives. Why is the DDS messing with success?



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