In a shocking reversal of floor amendments from both houses of the legislature, the Conference Committee today reported out a budget that gives Governor Patrick a free hand on an expensive plan of new spending to close four of the six developmental centers. "By removing the Fernald Center from study language after both the House and Senate had demanded an accounting, the conference committee has assured that 700 families will be thrown into chaos by the loss of day/employment programs for a loved one living at home," charged COFAR President David Hart. "Since Governor Patrick announced his facility closure plan in December with $45 million in new spending," Hart continued, "We have repeatedly pointed this out to legislators. Opening expensive new state-operated group homes to evict 500 people from longtime homes and programs that work for them has made less and less sense as the revenue crisis has deepened. First the House and then the Senate demanded feasibility studies as it became clearer that DMR/DDS had no real numbers and no real plan. The Conference Committee has taken advantage of language differences between the two houses -- both of which intended for Fernald to be included in the study -- to write the governor a blank check, and ignore an obvious source of funding to fill the gap in day services that has occupied all advocates this year."

   In a letter to all legislators June 1 (see attachment), COFAR stated: "the Governor’s own announcement stated that the closure plan required $45 million in new investments over the 'next four fiscal years. It estimated savings of $80 million at the end of the four years. Since Dec. 12, Commissioner Howe has described the plan as 'revenue neutral' and separately estimated that $42 million in savings over the next four years would offset the new investments.  These 'moving-target' estimates show that the Governor’s 'plan' is a charade. A careful study of the cost-shifting shell games involved will show that the “plan” is a guesstimated privatization scheme putting the most vulnerable people served by the Commonwealth at risk."    "The legislature must get the real answers: Before moving hundreds and hundreds of fragile and multiply disabled persons against their will from homes and programs that work for them, with well-documented risks. Before committing to an expensive program of buying, leasing, converting, and rebuilding 20-30 new group homes, at the expense of day programs and respite supports for thousands of families who have relatives with MR/DD living at home. Before breaking up two-thirds of the safety-net comprehensive treatment centers that serve 10,000 community-based DDS clients each year, as well as backing up the community residential system. Before reaching the tipping point of privatization, after which the private providers can dictate pricing and policy. And about what DDS plans to do about 17,000 people now living at home with parents over age-60. This is no time for DDS to be closing anything." 

   "We were told that DMR/DDS officials visited Senators in May claiming that if they could not close Fernald on schedule, they would need an additional $15 million," said COFAR Vice President Thomas Frain. "The Senate as a body compared that with previous statements that the plan was 'revenue neutral,' and asked for a study with Fernald included. We believe the plan is not revenue neutral, because the unusual population of aging and multiply-disabled residents at Fernald and the other three Developmental Centers slated for closure are actually more expensive to support in so-called community residential, and will have worse outcomes. It's shell game of cost shifts to the private non-profit providers of residential and day services, to the Department of Public Health for medical and therapeutic services now provided at Facilities (and provided to more than 10,000 persons who aren't facility residents), to capital budgets, and to the high salaries of private provider executives. By dropping the ball on Fernald, the Conference Committee has missed an excellent chance to fill other budget gaps in DMR/DDS for FY2010," Frain concluded.

  "The Conference Committee budget reinstates pro-facility closure language that was rejected by both houses," added COFAR Executive Director Colleen Lutkevich. "It does contain a weakened feasibility study of the other three Developmental Centers that the Governor plans to close in three years. If that study is conducted fully and honestly, there may be real regrets over last night's decision. Meanwhile, the DDS budget sends us into next year with no day programs or transportation for 700 people living at home, whose caregivers must now quit jobs or scramble for some way to keep their loved ones safe and making progress. They may also be losing their respite services. These cuts fall especially hard on families with loved ones at home because of the structure of community residential services, where group homes aren't fully staffed during the day. There will be $2.5 million less for young people graduating from chapter 766, and no promise that what programs they can be offered will still be funded in FY2011. We are also concerned that the Conference Committee chose to save very small sums by using the lower Senate figures for the Tufts Dental Facilities plan, which is the only way for thousands of disabled people to get dental services, and for the Disabled Persons Protection Commission, which already has a backlog of 800 cases of abuse and neglect, and will now have to reduce its staff by five more people. Although it is easy to accept cuts in administration, the cuts to the DDS administration budget mean that an increasingly privatized system will have even less oversight, and service coordinators will barely visit group homes or see the people they are supposed to be helping. People with Mental Retardation/Developmental Disability are the most vulnerable people served by the Commonwealth, and next year they and their families are going to suffer unnecessarily," said Lutkevich.

In another area monitored by COFAR, and debated in the Senate, privatized contracts up to $500,000 per year will not be reviewed by the legislature. The previous limit was $200,000. The House budget did not contain any changes to this figure. "With DDS, we may already be past the tipping point where private providers can dictate terms to the taxpayers. If not, this little item moves us dangerously closer to that situation," noted COFAR Vice President Frain. 

--end-- 

COFAR is a 26-year-old statewide coalition of parent/family groups and individuals caring for people with Mental Retardation/Developmental Disability.  We are advocates for a full continuum of care and for family choice. COFAR is the Massachusetts affiliate of the national VOR (www.vor.net).

DMR – The Novel

Paperback: 319 pages $15.95

Publisher: One Tiny Pizza Publishing (April 28, 2008)

http://www.otppub.com/dmr.html

COFAR members will probably not want to read this well-written novel, based on the author’s six months of real-life work at a state-operated group home. That’s too narrow a slice to get everything right, as family members understand from a lifetime with our loved ones. Trask also made a literary decision to make his central character a slacker and binge-drinker, who is even more clueless about the DMR system than the average six-month hire.

But when our friends offer to give us a copy of DMR, we should suggest that they read it. Trask does a very good job with the characters who have severe-to-profound MR/DD, and with the group dynamics of a small residence. So little has been written, fact or fiction, about that world, that his novel is a good read for the general audience, and bound to provoke more interest. We wish there were a few non-fiction studies, TV documentaries, even academic works to recommend next, but for now we can point out that there are volunteer opportunities in every city and town.

            If readers ask about facts, we will have to remind them of a brief reference deep in the book to the state-operated group homes serving the most disabled people. To call the book “DMR” without clarifying that point is unfair to the majority of people with MR/DD who are better able to communicate and thrive in community settings. The book almost entirely omits family members, or any other guardians. Don’t give this book to a career mental retardation worker, either. Most of the employees are described as goldbricking, sleeping on overnights, routinely falsifying paperwork, and neglecting treatment plans. COFAR members do encounter workers like that, but there are also the saints and miracle workers. There are some good workers in the book, and a lyrical passage about taking the residents for a swim. 

            Most troubling for COFAR members will be the author’s decision to center the character’s moral vacuity on a sexual relationship between a staffer and a non-verbal resident.  The character doesn’t know what to think, and it is left up to the reader. Informed readers will know that a profoundly retarded woman cannot consent to rape, and that the character has neglected his duty as a mandated reporter, by doing nothing.

             The novel is not widely distributed, but it is in some Mass. bookstores, and the author does readings and appearances. The link above will give you a way to order the book on Amazon. If there is interest here, COFAR did an email "interview" with author Trask which has his serious reflections on the state of he DMR system in which he worked, and a more positive view of the work itself.