Wait List Survives Until Next Election
By: Chris Dornin, Golden Dome News

Wait List Survives Until After Next Election
By Chris Dornin, Golden Dome News

CONCORD - Republicans and some advocates for the disabled are bitter the new two-year state budget fails to end the wait list for folks with traumatic brain injuries, cerebral palsy, mental retardation and other developmental disabilities. Democratic Governor John Lynch recently signed into law a bill sponsored by four members of his party to meet that long-delayed goal in three years. His draft budget in February would have done the same job in four years, with only the first two years of funding guaranteed.
  But the enactment of Senate Bill 138 means the next election will decide which lawmakers finally raise, or fail to raise, the money for a third year of wait list reductions down to zero for the hundreds of families now in limbo. Rep. Charlie McMahon, R-Windham, knows what that limbo is like. He sponsored the competing Republican wait list plan, House Bill 265, to finish the task in two years. It got retained in the House by a floor vote of 173-124 on strict party lines.
  His 20-year-old son has cerebral palsy and will probably do time on the wait list when he ages out of special education soon. McMahon, age 52, works 18-hour days in real estate and electronic sales to make sure the young man always has supervision.
  The state rep tells a story about the stress on caretakers. An 83-year-old in Connecticut shot himself, his wife and both of his disabled adult children this winter.
  “He was afraid of what would happen to them when he was gone,” the Republican said. “This is a life of quiet desperation. Sometimes the people crack.”
  McMahon blamed Democrats for killing his bill because eight Republicans and no Democrats sponsored it.
  “Nobody can obligate a future legislature to spend money,” McMahon warned. “We needed $32 million to do the job, and we came $5 million short. Actually it was $2.5 million short in general funds. The feds would have matched our share as part of the Medicaid program. Yet these parents have saved the state tens of millions of dollars over the years by taking care of their family members at home.”
  McMahon chaired the statutory Wait List Oversight Committee that schemed last summer and fall to sell the legislature on a quick elimination of the list.
  “We’ll start the next biennium with 300 people on it,” he said. “The Democrats passed the $12 million Land and Community Heritage Investment Program, but they couldn’t put people ahead of trees and shrubs.”
  Rep. Marjorie Smith, D-Durham, chairs the House Finance Committee and praised McMahon as a strong friend in the Statehouse for all children, not just for his son. She said service provider rates have been frozen for so long the area agencies are short of staff and many personnel are poorly trained.
  “They need time to build up their capacity,” Smith said. “Otherwise, the life raft we have in place will capsize or we’ll have to push some people overboard.”
   Senator Maggie Hassan, D-Exeter, has a son with cerebral palsy about to age out of special education and go onto the wait list as well. She co-sponsored SB 138 to help every person in his predicament.
  “This isn’t about meeting an arbitrary deadline before next election so someone can claim credit for ending the wait list,” Hassan said. “Many families, including my own, have found their loved ones eligible for services, but there was no one to provide them. The bill includes pay raises to make doing direct care more attractive and it improves quality control. I agree there’s no guarantee about that third year. But the law gives parents some means to enforce its promise.”
In the Senate floor fight over the legislation, Senator Peter Burling, D-Cornish, asked Republican Bob Letourneau of Derry why his party failed to end the wait list when it held power for so many years.
  “That’s a good question,” Letourneau said.
   Christine Santaniello heads Lakes Region Community Services Council in Laconia, the state-funded area agency in Belknap County for folks with brain injuries and developmental disabilities. She trusts the new law will do what people had hoped, create a true entitlement for services.
  “I am thrilled the legislature has passed this very important bill that delivers on promises to the residents of the state with developmental disabilities,” Santaniello said. “The wait list will be eliminated in three years and we can do effective planning for people leaving special education.”
  Rep. Suzanne Butcher, D-Keene, worked for the Democratic version in the House and spoke at the Governor’s bill signing ceremony. She said the legislation provides the time and the funding to beef up community services in a responsible way.
  “I know people who have been desperately waiting,” she said. “The list is terrible for a kid just coming out of school after working all those years to gain the skills for independence. Does a parent have to quit their job now? Is their child going to sit somewhere without the supports to hold a job of their own?”

  Marti Shedd of Eaton has a 22-year-old son with Down syndrome. Kenny lives with his parents while he waits for residential services through Northern Human Services, the state-funded area agency for folks like him in Carroll and Coos counties. The burden of supervising Kenny on nights and weekends puts a lot of pressure on Shedd. She works full time and takes classes part time.
  But she loves his day program. It has helped her son hold down three part-time jobs, swim in the Special Olympics, and carry its symbolic torch this summer through Conway. Until her schedule got too hectic, she also served as chairman of the DD Family Support Council in Carroll County. She still tracks key legislation.
  “The Democrats wanted to do it their own way, and that’s why they voted down the Republican bill,” Shedd agreed with McMahon. “I was furious with them and sent many of them emails about it. If the Democrats and Republicans could just stop fighting and stop playing dirty politics and games and wasting time, this could have been done a long time ago. It’s long overdue. I’m deeply disappointed it didn’t happen this time. They keep stalling over who gets the credit.”
   Senator Kathy Sgambati, D-Tilton, co-sponsored the new law.  She has known about the wait list from the beginning when she was a senior administrator in the Department of Health and Human Services. In the Senate floor fight over her bill, she warned that the statewide service system is understaffed from years of low funding. She explained the bill provides several 2 percent pay raises for direct care staff as well as the needed training and quality assurance oversight for the 10 area agencies and the their vendor programs.
  “The commissioner (John Stephen of Health and Human Services) told us he could identify $7 million to fund the wait list in a short time,” Sgambati said after her bill passed. “We haven’t seen where that money would come from. I have worked for this population for decades. That department only offers essential services. If you cut mental health or substance abuse, it would create wait lists there.”
 Senator Martha Fuller Clark, D-Portsmouth, praised Sgambati for her depth of understanding on the issue.
  “It’s a truly significant change,” Fuller Clark said. “The very people who opposed it in the past were saying we should have done it quicker this time. That’s a real contradiction. If it becomes possible to do it sooner we can revisit the timing in Fiscal Committee.”
   Rep. Whalley fought for his version from the floor of the House.
  “I want you to live up to a promise we made and a moral obligation to help people who need state services,” the Alton Republican said in a floor speech. “People from the area agencies testified they could do this in two years. There was no issue with training or salaries.’
   Dennis MacKay heads Northern Human Services, which last year absorbed the Center of Hope area agency based in Conway. The forced change saved the state nearly $400,000 in duplicate administrative costs, and it will yield the same savings every year. That consolidation and one like it in Lebanon and Claremont saved nearly $800,000 per year, moving 40 families and clients off the wait list statewide.
  “This bill completes the dream we had when the state closed Laconia State School and began to integrate people into the community,” MacKay said. “But all the area agencies could have done it in two years if they had given us the money.”
   Commissioner Stephen pushed through the two mergers last year over strong opposition from some of the programs involved and from Governor Lynch. Critics warned the change would save little money and might disrupt services for clients. MacKay said the toughest challenge was integrating the Center of Hope accounting system into the one for Northern.
  “We blended the two cultures, and the staff members from both agencies are enthusiastic about it,” MacKay said. “They weren’t distracted by the politics and the dramatics of the merger. The feedback is all remarkably positive.”
   Shedd had deep misgivings about the merger before it happened.
   “I was so nervous about it,” she said. “It’s a vast geographic area. Kudos to Dennis MacKay and everyone who made it work. I have no worries about my son and his care at all. Five or six years ago there were many angry parents complaining about the wait list. Now they don’t feel completely ignored the way they did before. There’s a lot more contact with those families than in the past. That’s pivotal.”
  Richard Cohen, head of the Disabilities Rights Center, said the legislation makes community services a true entitlement beginning in 2010. He hoped the extra training and the modest pay raises would encourage employees to look at their jobs as a viable career.
  “After 2010 nobody can be on the list from the time of application to the start of services,” he added. “Legislatures will have to set aside the money to do that. That’s a great boon and fills a great need.”