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DDS 5-year plan seen as reducing client choice

November 15, 2011

At a public hearing in New Haven on November 2, Department of Developmental Services Commissioner Terry Macy and two deputy commissioners got an earful from guardians and family members who are not happy with DDS services or the direction in which the department appears to be headed.

The hearing was one of two scheduled to showcase the DDS’s new draft 5-year plan, a 26-page document, which calls for giving more choice to consumers, but limits that choice to small, privatized settings.  

I was only able to attend the November 2 hearing.  The first hearing, on November 1, was held in Hartford, and the comments may well have been friendlier at that venue.  But during the November 2 hearing, speaker after speaker expressed frustration in dealing with DDS or anxiety about the future for their loved ones in DDS care, and I heard no one express a desire for smaller, privatized residential settings. 

In fact, people told Commissioner Macy the draft 5-year plan was taking the department in the wrong direction by advocating a transition from public residential facilities, such as the Southbury Training School and five regional centers, at a time when hundreds of people around the state are waiting for residential care.

Cindy Stramandinoli, president of the parents group at the Lower Fairfield County Regional Center, took issue with the longstanding DDS policy of blocking admissions to STS and the public regional centers.  There are 8 empty beds at the Lower Fairfield Center, located in Norwalk, and a much larger number of empty beds at STS.

“It’s disturbing to see these empty beds when you have people on waiting lists for DDS care,” Stramandinoli said.  She termed it a fault of  the 5-year plan that it doesn’t include any references to those having the most severe and profound levels of intellectual disability, who make up the bulk of the population of STS and the regional centers.

A common concern at the hearing was, as one person put it, “what happens when I die?”   Plan or no plan, guardians said they lacked any sense of assurance that their loved ones will be looked after adequately when they (the guardians) are no longer around to do so.  One woman with two Down Syndrome daughters said she feared that under DDS policy, her daughters, who have always lived together, may one day be separated.  “If I drop dead, I have no say,” she said.

DDS Commissioner Terry Macy (center at far table) listens to testimony at Nov. 2 hearing on DDS draft 5-year plan

The plan’s emphasis on small settings did not resonate at this hearing.  One woman, who has a son with Down Syndrome, maintained that “one size doesn’t fit all.”  And she took issue with a statement in the plan that residents of small group homes have more choice and are “less lonely” than those in regional or developmental centers.  “That statement is a complete misnomer,” she maintained.

“I lived next door to a group home for 20 years,” added Stramandinoli.  “They were very lonely in there.  The community did not rally behind them.”

There was also concern that while the draft plan calls for placing “more emphasis” on personal and family involvement in DDS care, it does not adopt language in federal law that individuals and their families should be the “primary decisionmakers” with regard to DDS services and supports.

James Payden, the father and guardian of Geraldine Payden, a resident at STS for the past 45 years, maintained that DDS should follow the federal Developmental Disabilities Assistance and Bill of Rights Act and defer to families as the primary decisionmakers.   Payden’s wife, Ellen, noted that Gov. Malloy stated that society has a moral obligation to care for its neediest members.  “You said ‘put our families first,'” she told Macy.

The issue of the waiting list and the 5-year plan’s failure to address it adequately was a dominant topic of the hearing.  Martha Dwyer, the sister of an STS resident, noted that unless facilities such as STS are opened to more residents, they will become more and more expensive to run.  Given the existence of the waiting list, it would make sense to open STS to those who could benefit from its comprehensive level of services and 24-7 medical care, she said.

Yet, rather than finding ways to fill empty beds and otherwise serve those waiting for care, DDS appears to be closing existing facilities, potentially making the waiting list problem worse.  Gail Roundtree, whose sister, Crystal, lives in Ellsworth House, a state-operated group home in New Haven, said she and other guardians have been “pressured and bullied” by DDS administrative staff in Wallingford into transferring their loved ones to privatized group homes.  A court-appointed guardian of a resident at Ellsworth House said the guardians had been notifed the house was slated to close in 6 weeks.  It has apparently been kept open only because guardians filed administrative objections to the transfers.

One participant at the Nov. 2 hearing said DDS has been of little help to his family in dealing with issues involving his severely brain-injured brother.  In all the years his family has dealt with DDS, they received only four phone calls from agency personnel, he said.

I have to note that Macy didn’t seem to have much to say in response to many, if not most, of these complaints.  One reason for that may be that Macy is an advocate of privatizing DDS services — a position that is ultimately consistent with closing state facilities. 

Macy, who was a provider executive for 20 years prior to becoming DDS commissioner in May, told state legislators at his confirmation hearing that one reason for moving STS residents to privatized group homes is to help improve providers’ financial bottom lines.

Ironically, it appears that while the draft 5-year plan advocates smaller, privatized settings of care, it may inadvertantly make a case for STS in reporting that the state took in $109.9 million in federal Medicaid funding for operating STS and the five public regional centers, and $315.8 million for operating community-based group homes.   That federal money goes right into the State of Connecticut’s general fund.

By our calculations, STS and the regional centers garnered 22 percent of the total federal Medicaid reimbursement coming to the state for DDS residential services, even though those state facilities serve only 7 percent of the residential clients in the DDS system. 

In other words, based on the figures in the 5-year plan, shutting down STS and the regional centers and moving all of the residents into community-based care would result in an annual loss the state of $79 million out of the total of $496 million received in federal Medicaid funding for residential services.

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4 Comments
  1. K. Bristol permalink

    Thank you for the updates. They are much appreciated especially when you live out of state.

  2. rita altman permalink

    I am a sister of a deceased resident of STS. My brother was moved from STS to a private facility and it was an awful situation. He never received adequate care and after about two months we insisted that he be moved back to STS. He was profoundly retarded and his care at STS was always the best. After he moved back there, I was very much relieved. Please do not close STS. There is no way to replicate the great care and resources available there for those that have profound disabilities.

    Thank you,
    Rita Altman

  3. Hugo Dwyer permalink

    I attended this meeting, and was disappointed to hear Commissioner Macy’s unwillingness to speak to the needs of those in attendance and to directly address the issues they raised. For most of the people who participated in the hearing, it was apparent that this was their first chance to speak directly with someone at the state agency that controls the housing and services that determine the quality of life for their family member. They had not come to the hearing to discuss Commissioner Macy’s Five Year Plan, but as an opportunity to have their problems acknowledged by someone in a position of authority. Respectfully, the commissioner’s plan is just a pamphlet outlining goals and objectives that will change over the course of the next 60 months. The problems of the people who rely on the state for services are much more important to their guardians than Dr. Macy’s plans for his agency. Their needs are ongoing, not limited to a mere five years.
    The Commissioner appeared aloof and unconcerned, and asked that those attending limit their questions to a discussion of his five year plan.
    -Hugo Dwyer

  4. I have to agree with Hugo Dwyer’s observation that Commissioner Macy seemed aloof during the hearing. I thought a telling moment came early on when one STS guardian asked that a hearing be held in Fairfield County to accomodate elderly family members who aren’t able to drive as far as New Haven or Hartford. “It’s too late to do that,” was Macy’s only response.

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