CSEA Applauds House for Passing Employee Free Choice Act
CSEA is applauding the U.S. House of Representatives for passing on Thursday the Employee Free Choice Act (H.R. 800), which will end the fear and intimidation workers experience as they try to form unions.
The Employee Free Choice Act restores workers' freedom to choose a union by:
Crash Kills New Visions Client, Leads To Questions
State Dormitory Authority Tables NYSARC Application One More Time, DASNY Wants A Meeting With CSEA
State Dormitory Authority Again Tables NYSARC Application
When Love Means Letting Go
The wait can be years for aging parents who seek answers about what is going to happen to their children with special needs
By STEPHANIE EARLS, Staff writer
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First published: Sunday, October 1, 2006
The living room is long -- long enough to fit the two folding tables that now seat 20 people -- under high ceilings, over carpet so new it's still springy. The glass door at the back overlooks a panoramic backyard.
It's a good house. A solid house. But a home -- especially a home like this one -- is so much more than its look. A home is about the people inside it.
On this day in mid-September, these people are still strangers in a strange place.
"What do the staff do at night?" asks Susan Carpenter, quietly, sitting beside her parents at the table. "Do they peek through the rooms?"
"No, they don't peek through rooms," says Anthony Hanson, the straight-talking, bewhiskered guy who's here to answer questions. "Sometimes they clean and do other chores. Some people need 15-minute checks. No one will wake you up."
Susan is clearly apprehensive about moving into this home on Geyser Road in Wilton, the 15th group home for developmentally disabled adults that Saratoga Bridges has established, where she will live with four other women she doesn't yet know and round-the-clock staff.
She glances over her shoulder, at her mom, the woman who has always helped her put on makeup or walk down steps, who moved the family 3,000 miles so Susan could have access to some of the nation's best services.
Susan whispers a worry -- just a few words. Mother-daughter code. Theresa Carpenter rests a comforting hand on her daughter's shoulder.
She knows this is for the best.
Because she knows she is running out of time.
When it happens in November, the move will be the first time Susan, who has a mild learning disability and sensory problems due to a birth injury to her brain, has lived away from home. She is 47.
It was a difficult decision, this move. But Theresa is 69 and her husband, Susan's stepfather, Craig, is 78. When they moved from California to New York six ago, they put Susan's name on a statewide list of people waiting for spots in homes like the one on Geyser Road. They were OK with the wait, which they were told would be years. Families on the list with the most pressing situations are given priority, no matter how long they've waited. In 2004, though, doctors told Theresa there was a 40 percent chance the cancerous tumor on her pancreas would return. If it did, they wouldn't be able to operate.
"I thought, oh my God, who takes care of her when I can't?" said Theresa.
Today, nearly 2 million people in the United States with developmental disabilities live in homes with family serving as their primary caregivers. Those who live independently often rely heavily on family support. Roughly a quarter of these family caregivers -- many of them Silent and Boom Generation parents -- are either well into or facing retirement and their own declining abilities.
"These are the parents who opted to keep their children at home, to provide where nobody else could or would, because the only option was to put them in state schools -- basically institutions," said Andrew McKenzie, executive director of New Visions, the Albany chapter of Delmar-based NYSARC, formerly the New York State Association for Retarded Citizens, the nation's oldest and largest agency supporting families and people with developmental disabilities. "They blazed the trail. Now, many of these parents are in their 80s and 90s. They're dealing with their own mortality and what's going to happen to their children."
As recently as 40 years ago, parents who gave birth to babies diagnosed with cognitive and developmental disabilities were often still encouraged, up front, to put them in institutions. Beginning in the 1950s, though, an increasing number of parents began raising children, even children with profound disabilities, at home. The choice provided a more nurturing environment and a better quality of life for the child and -- in the short term -- saved the government billions on round-the-clock care.
Now, as caregivers age, that population is beginning to require more from a system struggling to make room for them, as federal Medicaid spending -- the major funding source for such services -- continues to be cut.
As it stands, there "isn't an overabundance of residences" and vacancies are filled quickly from the waiting list, said Tom Schreck, director of communications for Wildwood Programs, a Capital Region agency that serves around 1,000 special needs people and their families annually and runs 15 community residences. "We tell families to get ready for that," Schreck said.
Statewide, more than 400 agencies provide residential services to adults with cognitive and developmental disabilities. In the Capital Region, more than a dozen agencies, both state and nonprofit, run group homes. Though the number of housemates, their abilities and needs vary from home to home, housemates traditionally function at compatible levels.
Five years ago, Margaret and Tony Mascord added their daughter Becky's name to the New York state waiting list, looking for a group residence that would be close to their Mechanicville hometown. Doctors had discovered a tumor in 69-year-old Margaret's colon, and 74-year-old Tony had been diagnosed with a heart condition.
They realized the time would come when they wouldn't be able to do what they've done since Becky was born: care for a child with Down syndrome.
"We decided we really should do something," said Tony Mascord. He felt the responsibility of caring for Becky, who is 33 but functions mentally at about the level of a 6-year-old, was too much to ask of her siblings, who are all raising families of their own.
Later this year, Becky will join Susan Carpenter in the four-bedroom home run by Saratoga Bridges, the Saratoga County branch of NYSARC. The agency, a not-for-profit that provides services for people with cognitive and developmental disabilities, is planning to hire about a half-dozen employees to care for the residents at the Geyser Road house, a 2,000-square-foot home that cost $259,000; medical staff will be on call 24/7.
Overall, between 80 and 90 percent of the funding to agencies like Saratoga Bridges, for programs like these, comes from Medicaid, via the state Office of Mental Retardation and Developmental Disabilities. A federal proposal to cut tens of billions of dollars from Medicaid funding over the next decade has agencies worried, as what has been called a "perfect storm" -- decreased funding and a greater need by the public -- looms.
"Everything I am seeing is that the work force is dwindling," said Mary Ann Allen, Wildwood's executive director. Turnover among the workers who staff homes like the Geyser Road house, as well as those who support the developmentally disabled living independently, is high. And though pay among agencies varies, service coordinators and others who work in the field cover huge territories, work erratic and taxing schedules and are notoriously low-paid. "It's comparable to what people make working at a drive-through, and these people have to deal with people who are nonverbal, whose actions can signify illness or hurt."
Simply put, the field is losing caregivers, to age and to pay.
"I live the fear of what happens to a child after a parent is no longer able to care for them," said Allen, herself the mother of a 19-year-old with special needs. "It's very real, and it's very profound."
The anxiety about that transition -- or simple lack of knowledge about options -- can be enough to keep it from happening. It's estimated that roughly half the older caregivers of special needs adult children exist off the records -- that is, unknown to either the aging or developmental disability service system.
"That's part of the problem. You don't know what the estimation might be," McKenzie said. "We know in our facility who's living at home with a parent and who's filled out the universal application and is on a wait list. We've also seen families where they've waited too long, and then the care-giving parent became incapacitated and that creates a crisis."
Earlier this year, in fact, a single-parent caregiver in her 80s who had previously declined to make plans for the care of her son had to be hospitalized,McKenzie said. Emergency placement -- and, ultimately, a longer-term spot -- was found for the man, who is in his mid-50s.
"Although that doesn't happen monthly around here, it's not so rare that you don't worry about it," McKenzie said.
Sally Miller was 93 before she was ready to consider the reality that her 63-year-old son, Alex, whose disabilities resulted from a brain injury, would someday have to leave.
"At my age, you never know what's going to happen," said Miller, who still makes her son's meals and drives him to appointments. Alex is scheduled to move into one of the 20 group homes run by New Visions later this year. "I wanted him with me. He has to be taken care of some way, and this is a good way."
Other families begin preparing years in advance.
Though he knew his 24-year-old son, James, might eventually want to move out, Steven Blow of Albany didn't really think about the reality until this year, after his wife died from non-Hodgkin's lymphoma.
Until she got sick, Deborah Blow handled many of the household duties for both her men: her son, James, has Williams syndrome, a rare genetic condition characterized by physiological abnormalities and mild learning disabilities, while her husband has been blind since birth.
Now, 53-year-old Steven, a lawyer with the New York State Department of Public Service, and James are learning to live without Deborah and -- ultimately -- without each other.
Though his service coordinator has prepared him for a maximum eight- to 10-year wait, James is itching to get on his own. He is on a waiting list for six different group homes in the Capital Region. Meantime, he and his father practice.
"We're in a transition," said Steven Blow. "James is learning his individual living skills, like learning to cook. I'm also learning to do that, through Commission for the Blind."
In the Carpenters' home, the transition is well under way. Over the following weeks, Susan -- as well as her soon-to-be-roommates -- will help New Visions choose the staff who will work in the Geyser House. The women also will get together for social, "get-to-know-you" events -- pizza and bowling.
The baby steps have eased the minds of both mother and daughter.
"As far as her going in there, we're free of the worry of what's going to happen to her, but it's not easy either, the letting go," Theresa Carpenter said.
So for now, plans have turned to the future. Theresa is writing a narrative about Susan's condition so workers at Geyser Road can better understand her.
Theresa also has stipulated that, if the cancer comes back, if it looks like she's near the end, she doesn't want Susan to see her. It would be too traumatic. She intends to protect her daughter from pain as much she can -- even if it means telling her no.
Susan witnessed how Theresa cared daily for her own elderly mother, who spent the last two years of her life in a nursing home. She saw it was difficult work -- work that only love can give you the strength to do. She told her mom she wanted to do that for her someday.
"I really want to take care of you," Susan said.
Because that's what families do.
Stephanie Earls can be reached at 454-5761 or by e-mail at searls@timesunion.com.
Area resources
Albany County New Visions, 334 Krumkill Road, Slingerlands, NY 12159; Phone: (518) 459-0750; http://www.new visionsofalbany.org Wildwood Programs, 2995 Curry Road Extension, Schenectady, NY 12303; Phone: (518) 356-6331 (school); 1202 Troy-Schenectady Road Building No. 1, Latham, NY 12110; Phone: (518) 783-3421 (central and business office); http://www.wildwood.edu Saratoga Bridges, 16 Saratoga Bridges Blvd., Ballston Spa, NY 12020; Phone: (518) 587-0723; http://www.saratogabridges.org NYSARC Inc., 393 Delaware Ave., Delmar, NY 12054; Phone: (518) 439-8311; http://www.nysarc.org Center for the Disabled, 314 S. Manning Blvd., Albany, NY 12208; Phone: (518) 437-5630 New York State Office of Mental Retardation and Developmental Disabilities, http://www.omr.state.ny.us
All Times Union materials copyright 1996-2006, Capital Newspapers Division of The Hearst Corporation, Albany, N.Y.
Report Finds Quality Care Crisis In Nassau AHRC
September 26 2006
Mineola, New York - CSEA - New York's leading union - today released a disturbing report detailing scores of violations at the Nassau AHRC that jeopardize the health and safety of the developmentally disabled individuals in their care, as well as the staff that care for them.
The Nassau AHRC is part of NYSARC, Inc. the state's largest contractor of services for people with developmental disabilities with 49 chapters across the state and $1.4 billion in revenues, most of it from public funds. There are about 2,000 direct care employees at Nassau AHRC.
As he held up a copy of a scathing report and was surrounded by concerned workers, community members and state lawmakers, CSEA Long Island Region President Nick LaMorte called for immediate state inspections of Nassau AHRC facilities.
He said the report, which was developed through interviews with AHRC workers and delivered yesterday to the (OMRDD) Office of Mental Retardation and Developmental Disabilities, details hundreds of alleged regulatory violations.
"You could say that this is a violation of the public trust. AHRC is supposed to be caring for the developmentally disabled. But according to his report, the quality of care delivered to the most vulnerable in AHRC facilities is not only severely lacking; it has reached the crisis point," said LaMorte.
"The report alleges consumers and workers are subjected to hazardous conditions, where basics like sanitation, fire safety and proper sanitation are lacking; And where insufficient staffing, high turnover and inadequate staff training pose a danger to everyone involved," said LaMorte.
AHRC workers like Keisha Johnson from the Freeport Vocational Center contributed to the report only after they had tried repeatedly to get management to improve conditions. "AHRC management knows that consumers and workers are getting sick from this broken-down building, and they do nothing about it. There are roaches and mice droppings, the bathrooms are constantly in an unsanitary condition, and the vans that we transport consumers in consistently are in terrible shape," said Johnson.
Renee Brooks works at an AHRC community residence in Westbury, agreed. "AHRC management knows that understaffing is major problem but does nothing about it. Turnover is high because the pay is low and the benefits are poor, there is no job security, and no process for career advancement. There have been many times in many of the community residences, where consumers live, where there is no manager on duty," said Brooks.
Nassau AHRC employees have been working with CSEA to form a union at the agency. These employees have requested to meet with management to deal with the problems at the agency and discuss a fair process for unionization. They have been repeatedly rebuffed by Executive Director Michael Mascari and his management team.
Standing in support of the workers at the press conference were Rev. Henry Benack, retired chaplain from Glen Cove; James McAsey, executive director, Jobs with Justice; John Durso, president of the Long Island Federation of Labor, as well as State Assemblymen Rob Walker, Chuck Lavine, and Bob Barra.
"It is essential that agencies such as the AHRC that are primarily funded by the taxpayers of this state provide the highest quality of care and treat its employees, with dignity and respect. Both of these issues need to be addressed immediately," said Assemblyman Rob Walker.
"The complaint spells out the need for Nassau AHRC take immediate action which should include meeting with the employees and refraining from any and all anti-union activity," said Assemblyman Chuck Lavine.
"The workers' right to organize free of intimidation and harassment must be protected. It is clear today that Nassau AHRC has not listened to its employees and has a lot to hear and action to take," said Assemblyman Bob Barra.
Last winter, CSEA launched the Quality Care campaign seeking to secure a better future for developmental disabilities services in New York. The campaign is aimed at improving the delivery of services, addressing low pay and high turnover rates among employees of not-for-profit contractors and ensuring that quality standards are met statewide. CSEA represents 265,000 members in New York including about 18,000 workers in the developmental disabilities field employed by the state OMRDD and several not-for profit providers.