Liz Murphy knows she is in constant danger and has no way of knowing when it might strike. She keeps a jacket in the garage and wears her keys on her belt loop, both in case she needs to run to safety from her Town of Tonawanda home. It’s also why she has made the most difficult decision of all: She bought a gun and is prepared to use it.
It nearly breaks her heart to say who is the object of her terror – her developmentally disabled adult son, Brian.
“I try to hide it, but I have become afraid of my son,” she said.
Donald and Vivian O’Brien have devoted their lives to caring for their 55-year-old son Mike, a quadriplegic who needs round-the-clock attention. They are now entering their 80s and don’t know what will happen to their child when old age and their own health limits them.
“You have to be on the verge of being homeless to get placed. And, even then, you don’t know if the placement will be appropriate for your situation,” said Donald O’Brien.
Advocates laud the state’s goals for more choices and independence for the developmentally disabled.
But they question whether the state overestimates the ability of many individuals with lifelong severe mental or physical problems to live more on their own. They also remain skeptical, in an era of budget-cutting, that the state can expand all the alternative services and encourage the new types of housing that will be needed to make this happen.
A 24/7 job
Families face difficult circumstances.
Three months after his birth, Mike O’Brien’s heart stopped beating during a simple hernia operation. He survived but his brain was deprived of oxygen, and he became a spastic quadriplegic. Since then, his parents have cared for him in their home.
During the day, his parents help him shower, use the toilet, dress, eat and get about the community.
At night, they must turn him over in bed and stay nearby in case a problem arises.
Despite his physical disability, Mike earned a general studies degree and worked as a data entry clerk at the University at Buffalo for 10 years. He has traveled with assistance from his siblings.
“Mike is bright and interested in things. He is a delight to be around. But he needs someone to help him 24/7, and I am no longer healthy,” said his father, Donald, who is being treated for carcinoid cancer.
The O’Briens would like Mike in a community residence with individuals who offer a social and intellectual match for their son. The next best solution, O’Brien said, is bringing support staff into the home.
“Even if you are a parent willing to do some of the work, it’s hard to get support,” he said.
Other families, drained from decades of serving as primary care-givers, can find themselves overwhelmed dealing with adult children who have serious mental deficiencies or aggressive behavior.
Brian Murphy stands 6 feet, 5 inches tall and weighs 230 pounds. He is a linebacker-sized 21-year-old with the mind of a 2-year-old. He was diagnosed as autistic and hyperactive several years after his premature birth.
He cannot speak. Like a small child, he needs help with every activity of daily life.
When younger, Brian was cheerful and easygoing. But in the past year, particularly after his age made him ineligible for a school program and the deaths of a friend and relative who played with him, he has often turned angry and aggressive.
His mother keeps a journal, trying to document potential triggers. He has hurt her seven times, biting her on the head in one incident and grabbing her so forcefully another time that she was left with bruises.
Murphy speculates that Brian’s outbursts are his way of expressing grief that he is unable to understand. She lives on constant guard.
“The thing is I love him. If I wake up dead one day, he will feel abandoned,” she said. “I have tried to be the best mother I could be. But nothing I do now is enough for either of us.”
The uneasiness led Murphy and her husband, Thomas, to put a gun in the house, an agonizing decision Murphy talked about with remorse.
Earlier this year, she started the process of placing Brian in a group home with staff trained to handle someone with his needs. She thought he was already on the registry.
“We’re just burned out,” she said.
Assessing the needs
The New York registry for residential spots contained 12,057 requests statewide as of April, with 35 percent considered urgent, according to a state document provided by the Developmental Disabilities Alliance.
But 42 percent of those on the registry are marked as needing a community residence in three or more years, state officials say.
Also, the state plans an assessment of those receiving or requesting services. The effort will uncover people in group homes who can live more independently, thus freeing up slots, officials say. Advocacy groups counter the assessment will likely take years to finish.
The number of group homes in New York – some run by the state but many operated by nonprofit agencies – increased in the 1980s and 1990s in response to waiting lists and the move away from institutional care. There are 2,743 certified residential beds provided by 21 agencies in Western New York.
But the state in 2008, responding to budget concerns, curtailed the building of group homes. Today, the mounting concern over the availability of residential options, whether in group homes or alternative living arrangements, comes at a time when New York is attempting to fundamentally reshape services.
The plan seeks to move from paying hundreds of community agencies to handle care at facilities on a fee-for-service basis to using a managed care approach focused more on supporting services provided in the least-restrictive places.
The initiative is also meant to control costs.
Medicaid expenditures from 2005 to 2009 in New York for individuals with developmental disabilities grew at twice the rate of inflation, according to the state.
Costs have risen and more people are receiving services as the disabled live longer and more disabilities are diagnosed, officials say. The state ranks No. 1 in the country in the proportion of total statewide personal income devoted to financing services to the developmentally disabled, according to an annual University of Colorado disabilities report.
Absent a major change, experts say, the only way to maintain the current system is to limit services or spend more.
“When you look at the demographics and the number of people coming into the system, you have to ask how we will meet the needs and manage the services. We have to spend money as wisely as we can,” said Courtney Burke, commissioner of the state Office for People With Developmental Disabilities, which oversees services for the developmentally disabled.
She said the state recently reached a milestone of fewer than 1,000 individuals with developmental disabilities living in institutions, a decline from about 26,000 people several decades ago. She cautioned that the changes to create more community alternatives to institutions will take time and be disruptive, but will ultimately strengthen the program.
“Our system now is very supply-sided. We look at whether someone needs a bed or a slot for a service. We need more person-centered care that looks at whether individuals want something else and gives people more control,” Burke said.
Asked about criticism that the state plan is a “one size fits all” approach, Burke countered that the initiative is just the opposite.
“We have a diversity of needs, and we need to give people a wider range of choices for services, including new housing options,” she said.
The managed care approach aims to better coordinate care, integrate the disabled into the community, establish quality measures, and encourage the development of new types of residential options.
No easy answers
It also seeks to rely more on community organizations, with the developmentally disabled taking on more personal risk in the choices made about their care and living arrangements.
“We could be looking at a system that is more collaborative and creative,” said Rhonda Frederick, chief operating officer of People Inc., a major service provider in the Buffalo area. “But it’s going to take time to work out the kinks.”
Developmental disabilities are serious, long-term physical or mental problems caused by such conditions as Down syndrome, premature birth and autism. Individuals can have a wide range of skills and needs.
New York is not the only state confronting the problem of waiting lists for residential services. More than 268,000 Americans with intellectual and developmental disabilities are on a waiting list for home and community-based services, a doubling since 2005, according to the Case for Inclusion, an annual ranking by United Cerebral Palsy of how well state Medicaid programs serve the developmentally disabled.
“What we’re seeing is a complex shift in the whole system for the developmentally disabled. It’s part of a broader crisis for all people with disabilities,” said Todd G. Vaarwerk, director of advocacy and public policy for Western New York Independent Living Inc. “There isn’t enough money to handle the backlog, and there are no easy answers. OPWDD used to be the system. Now, we’ll need community solutions.”
Parents caring for their children at home remain apprehensive.
“We’re worried about what’s going to happen, about the quality, safety and the choices,” said DeLong, of Amherst, whose daughter is developmentally disabled.
“The numbers of people who need support are only expected to grow,” she said.