Slipping Through the Cracks

by Emily Ramshaw

April 21, 2010 | LINK HERE

Cameron Maedgen knows he’s dangerous. The autistic, brain-damaged and often suicidal 19-year-old — turned over to the foster care system as a drug-addicted infant — has violent outbursts and a fascination with guns. He's been jailed three times and admitted to a San Angelo-area psychiatric hospital six times since January.

But his adoptive mother’s tireless effort to find her son structure — a group home or residential setting where he’ll be safe and well-treated — has been foiled by a single factor: his IQ score. The state calls Maedgen too high-functioning for a residential facility or for the in-home program it funds for people with disabilities. Karen Bartholomeo says her son is too low-functioning, and certainly too unstable, to go without them.

Maedgen isn’t the only one in this conundrum. Advocates say a rising number of autistic and mentally ill children are reaching adulthood without the prospect of services because their IQs are simply too high. The state limits admission to its state-supported living centers to disabled people with IQs under 70 — and generally caps community-based care at an IQ of 75. Just because an autistic person’s IQ averages out higher, these advocates say, doesn’t mean he or she can manage without care.

“There’s nothing for us,” Bartholomeo says, her voice tinged with desperation. “Right now, my only hope is that he doesn’t kill himself, that he doesn’t hurt anyone else and that he stays out of the prison system.”

In the inverse situation, advocates say, are people with disabilities whose IQs are just low enough to keep them in state institutions but who might be better served in the community. But if their IQs test above 75, they not only don't qualify for the state-supported living centers — they don't qualify for most community-based programs either.

IQ tests are designed to measure the mental ability of children and to identify people who have cognitive or developmental disabilities. They're one of several criteria state officials use to determine whether someone qualifies for services, either at home or in a residential setting. Though the tests and what they seek to measure are complex, "as degrees on a thermometer show a person's temperature, IQ tests measure intelligence calculated from questions or tasks found ... to reflect intellectual functioning," said Cecilia Fedorov, a spokeswoman with the Department of Aging and Disability Services.

Though some experts question the veracity of IQ tests, of which there are a half dozen different varieties, they're recognized by national organizations like the American Psychiatric Association and the American Association of Intellectual and Developmental Disabilities — and so are used by state agencies that need some barometer for offering care.

Currently, 15 percent of the 4,300 residents in Texas’ state-supported living centers have “mild” mental retardation classifications, meaning they have IQs between 50 and 70. Fedorov said local mental retardation authorities perform the initial IQ test when a person applies for services. “Once an IQ determination is made, individuals are not required to be re-tested,” she said.

The cut-off gives institutionalized people and their guardians little incentive to get updated IQ assessments, for fear they’ll be left without any services, said Beth Mitchell, an attorney with the nonprofit disability rights group Advocacy Inc. “The real issue is why we have to tie services to a number — and it’s because of a lack of funding,” Mitchell said. “But if this kid ends up bringing a gun to a public place, ends up getting shot by a cop because we couldn’t spend a couple of extra dollars for care, what’s the cost to society?”

Vicki Hill Riedel’s 22-year-old son, Ryan, faces the same barrier. He has Asperger’s, schizoaffective disorder and seizures — but his IQ is normal. Ryan didn’t last long at a psychiatric group home, which had no experience with autistic patients. He’s been taken to a Plano-area psychiatric hospital so many times that the local police called Texas’ Adult Protective Services division. Ryan faced the exact same hurdle at the local mental health/mental retardation authority — his IQ surpassed 80, so he didn’t qualify for care.

At home, Riedel says, Ryan sleeps half the day then plays video games, occasionally agreeing to do minor chores in return for a trip to a restaurant. Rather than enjoying their retirement, Riedel says, she and her husband are essentially forced to run an assisted-living facility in their home. They have no alternative. And when they grow too old to care for Ryan, he won’t either. “My son,” she said, “is on the leading edge of a tremendous number of children with various levels of autism who will be reaching adulthood very soon.”

Bartholomeo, a social worker at San Angelo’s Goodfellow Air Force Base, became Maedgen’s foster parent when he was 3 weeks old and weighed just 5 pounds. Born addicted to cocaine, he required years of extensive rehabilitation to catch up developmentally. Maedgen’s behavioral problems presented early and only worsened. He was diagnosed with depression, ADHD, bipolar disorder and then finally Asperger’s, a form of autism in which language develops normally. He was on six different medications at once.

Maedgen thrived with structure, but Bartholomeo could only find it for him intermittently. She got him admitted to a youth residential treatment center and then a youth home, but both times he was too tough for workers to handle. Back at home, he was bullied in school and started stealing — jewelry from Bartholomeo, then BB guns from the local Academy store.

Bartholomeo turned Maedgen back over to state custody before he turned 18, hoping he’d have better access to services than she could provide. But when there were no foster homes to take him, and she learned he would be sleeping on the floor of state offices, she brought him back home. She visited private facilities she couldn’t afford. She begged and pleaded with disability officials to put him in a state-supported living center or to find him a group home. But averaged together, his performance IQ of 60 and his verbal IQ of 130 put him at a score of 95 — at the low end of “normal,” and well above the state’s cut-off.

In the last year, Maedgen stole a handgun “because it was pretty,” fired it in a local park, then called the police on himself, Bartholomeo says. He sometimes stops taking his medicine, repeatedly cuts himself, then calls authorities to tell them he’s suicidal. And he’s become violent with his mother.

Bartholomeo recently found a state Medicaid program that gives Maedgen 16 hours a week of cleaning, grocery shopping and laundry help — but not the psychiatric or developmental services he needs. “If I could find a way to get his IQ down to borderline, then he would qualify for a group home, for a little bit of structure,” Bartholomeo says. “He’s got a disability.”

Nursing homes get old for many with disabilities

(Link)

PROPUBLICA
06/22/2009
ST. LOUIS — Melody Ping never thought she would be trying to move out of a nursing home.She lived in a St. Louis apartment for 19 years and worked as an accountant until two years ago, when she lost her job. Ping, who has multiple sclerosis, couldn't find new work. When her unemployment ran out, she ended up on Medicaid in a nursing home.Ping, 51, is among tens of thousands of people nationwide who want to live on their own, but instead remain in nursing homes, rehab centers or state hospitals, often at a higher cost to taxpayers because of a historic bias toward institutional care.Ten years ago today, the U.S. Supreme Court said that bias amounted to discrimination. Now, as disability advocates celebrate the anniversary of that landmark ruling, they worry the Obama administration is backing away from a pledge to give more people with disabilities the option to live at home.

As a senator, Barack Obama co-sponsored the Community Choice Act, pending legislation that would give Medicaid recipients equal access to services in the community and not force them into institutions. But the administration recently said it would not address the issue as part of its proposed health care overhaul.Disability rights advocates were so angered that at least 90 were arrested during an April protest outside the White House. For some, the dispute was a blunt reminder of how hard it has been to put an end to discrimination even with affirmation from the Supreme Court."I don't think most policymakers see it as a civil rights issue," said Andrew Imparato, president of the American Association of People with Disabilities. "I don't think most people see the ability of getting out of bed and dressing in your own home as a civil right."A spokesman said President Obama continues to support efforts to help people with disabilities move out of nursing homes. About one in five nursing home residents responding to a survey by the Centers for Medicare and Medicaid Services indicated they would prefer to live in their communities. That translates to 270,000 of the nation's 1.35 million nursing home residents.Demand for community services is likely to mushroom in coming decades. Improvements in medical technology help more people survive serious injuries, but often with a disability. Baby boomers entering their retirement years are demanding alternatives to nursing homes. "If you can't hear the thunderstorm coming, you're not listening," said disability advocate Mark Johnson of Atlanta. Living at home "is what people would want for themselves and their families."THOUSANDS WAITINGThat was the motive for the Olmstead case — named for defendant Tommy Olmstead, Georgia's human services commissioner when the case was brought by two mentally disabled women, Elaine Wilson and Lois Curtis. They said they were segregated unnecessarily in a state hospital, and that with proper support, they could live at home.The Supreme Court ruled that funding services for Medicaid recipients only in institutions violated the Americans with Disabilities Act.The decision touched off a wave of hope. The U.S. Department of Health and Human Services recommended that state Medicaid directors draft plans for helping people who wanted to move out of institutions. Twenty-nine states produced plans, but few resulted in actual changes. Many are now out of date.Nationally in 2007, more than 331,000 people were on waiting lists for community services. About two-thirds have developmental disabilities, and the rest have other disabilities or are elderly.In Missouri, where about 48,000 people live in institutions, including nursing homes, about 45 percent of the state's Medicaid long-term spending goes to home services. About 4,000 people are on a waiting list for community services — most are developmentally disabled people, some who do not live in institutions.In Illinois, which has at least 97,000 people in nursing homes and other institutions, about 30 percent of Medicaid long-term spending goes to community services. Disability activists in that state worry that the current budget shortfall may force more people into institutions.Disability advocates blame the slow progress on opposition from the multibillion-dollar nursing home industry and from unions that represent state institution workers. Also, many states have been unwilling to alter budget structures that favor institutions.The American Federation of State, County and Municipal Employees has declined requests by disability groups to endorse the Community Choice Act, which it worries could cost the union's members jobs. The American Health Care Association has never taken an official position on the act, said Susan Feeney, a spokeswoman for the organization representing the nursing home industry. "We do support the ability for individuals with disabilities to receive the care they need in the most integrated setting." But industry groups have opposed measures to make community services mandatory, saying they could jeopardize funding for people who need nursing home services."It's difficult to bring about a cultural change," said Stephen Gold, a Philadelphia lawyer who has handled dozens of lawsuits for people seeking to move out of institutions. "It's like a big ship, and we're slowly turning it."More than 140 lawsuits have been brought across the country. While many led to individuals leaving institutions, they haven't always changed state Medicaid programs.Missouri was among the first states to allow Medicaid funding to follow a resident who leaves a nursing home. Federal grants and pilot efforts have encouraged similar policies.Two obstacles tend to stand in the way of people like Ping: They cannot get or find the services they would need at home, such as an attendant to help them get out of bed, dress or bathe. And they cannot find affordable, accessible housing, which is in short supply.In St. Louis, the waiting list for low-income housing vouchers is "closed indefinitely." And housing options in other Missouri cities can be hard to come by. Peter Lloyd of St. Charles knows how much harder it is to move out of a nursing home than into one. He landed there after being hospitalized by an infection and spent more than a year arranging for services so he could move to his own apartment. "I needed to be around younger people in the same situation," said the 44-year-old Lloyd, who has cerebral palsy. "None of the activities are geared for people my age. How many times a week can you play bingo?" After months of paperwork and phone calls, he got an apartment through the St. Charles County Housing Authority. He also got funding for an aide to help him wash, dress and cook.Seven years later, Lloyd is really on his own. He no longer needs a personal attendant. He drives a van, adapted for his power scooter, to St. Charles Community College, where he is pursuing a degree in English. On the weekends, Lloyd drives to Chesterfield, where he works for a computer help desk.But the chances of making a transition like Lloyd's vary widely from state to state.In Tennessee, only 1 percent of Medicaid long-term funds for disabled and elderly adults went to community services in 2007. By contrast, Arizona spends 64 percent of Medicaid long-term care money on community services. DEBATING COSTSDisability advocates argue that real progress won't come until more is done to keep people at home. They have pinned their hopes on the Community Choice Act.Similar bills have come before Congress for at least a decade. As a senator, Obama cosponsored the bill in 2007.But for now, long-term care is not part of his health care reforms. White House officials cited cost as the reason in a meeting with disability advocates in April.Obama's staff wouldn't say what his current position is on making community programs mandatory. The White House website had said Obama would support the Community Choice Act. Recently, the site was changed to say he would "build on existing efforts to encourage states to shift more of their services away from institutions."Disability advocates say that letting more people have services at home will save money, one of Obama's goals in health care reform. The average annual cost of a nursing home nationally is about $75,000, according to a recent study by AARP. Community services that allow people to remain at home are about $23,000 a year, according to an analysis of Medicaid data by the Center for Personal Assistance Services at the University of California, San Francisco. Critics warn that even if costs are lower in individual cases, overall costs will rise because more people with disabilities will request services if they are available.In Texas, where 18,000 people have moved from nursing homes since 2001, officials say they have seen the savings firsthand. "It certainly does not cost more," said Marc Gold, a state official who directs the Texas Promoting Independence Program.Chris Hilderbrant, of the Center for Disability Rights, said Obama and congressional leaders are missing an opportunity to fix a long-standing injustice. Once again, people with disabilities are left on the sidelines, he said. "We're going to get to you later," Hilderbrant said, "means we're going to get to you never." In St. Louis, Melody Ping is still waiting in a nursing home, longing for a return to apartment life, where she likely will need an attendant to help her."I'm used to making my own choices," Ping said. "Here, they tell you when to get up and when to eat."



ProPublica is an independent, nonprofit newsroom that produces investigative journalism in the public interest.

LaFleur's e-mail address is jennifer.lafleur@propublica.org.

Give disabled choice of home

Link to article

By MICHAEL VOLKMAN

First published in print: Friday, May 15, 2009
If you are a taxpayer in these hard times, then you will want to pay attention to this.
Medicaid, a health insurance program for people with low incomes administered jointly by the federal government and the states, is enormously expensive. For several decades now, Americans with disabilities have been pushing very hard to change an injustice within Medicaid that ruins people's lives and wastes your money.
The Medicaid statute requires all states to cover long-term care provided by institutions such as nursing homes, but does not require any state to support people to live in the community in their own homes.
New York is one of the few states that offer optional community-based services. However, the care available varies from county to county. For example, New York City and other urban areas can provide 24-hour coverage, while some rural counties only can afford to provide six or eight hours a week.
Twenty-seven states provide no community-based assistance, so people like me living in those states are taken from their families and shut away. Many other states restrict services and have long waiting lists to get them.
There are people who could live independently with just a few hours of aide service each day for less than $100, and others who need more hours but still could live independently. Instead, they are forced into nursing homes at a cost of hundreds of dollars more for each person for each day.
Disability advocates managed to get Congress to introduce bills in each house that would end this institutional bias and give consumers real choices with the full range of options for living in the community. These bills, now known as the Community Choice Act (HR1670 and S683), were first introduced 12 years ago. They do not move through the committees and get to a floor vote. They just sit there.
This year we thought we might finally get some progress. As senators, both President Barack Obama and Vice President Joe Biden were co-sponsors of the bill. During their campaign for the White House, they pledged that they would call for passage.
The Obama administration has made reforming health care a priority. It would make sense to include the Community Choice Act as part of this process.
The disability rights organization leading the charge on this is American Disabled For Attended Programs Today. At a recent series of meetings and rallies in Washington, ADAPT members encountered a very unexpected and very disappointing roadblock.
A small contingent of ADAPT leaders met with Nancy-Ann DeParle, the administration's health care reform czar. After that meeting, those who met with her quoted her as saying that the Community Choice Act would not be part of the health care reform and that we would just have to live with the institutional bias.
ADAPT responded by having several hundred people, mostly in wheelchairs, chain themselves to the front fence at the White House. Ninety-one people were arrested. Many veterans of these protests don't mind. One of their often-used rally chants is, "I'd rather go to jail than die in a nursing home."
Now the White House has changed the disabilities issues page on its Web site. Gone is mention of the President's intention to enforce the Community Choice Act. The new paragraph merely states that, "the President believes that more can be done to encourage states to shift more of their services away from institutions and into the community, which is both cost effective and humane."
Encouraging states to take the lead doesn't mean they will. If they wanted to, they could have done it years ago.
Is this really how the President feels about this issue?
Did he just give us lip service during the campaign?
Does he realize how many billions of dollars are being wasted every year to pay for a "service" that hundreds of thousands of Americans neither want nor need?
Congress has to act now. This is not just about money. This is also about freedom.
We can't keep wasting money this way. We can't keep wasting lives. And we can't waste another day.
Michael Volkman is a Capital Region resident and an advocate for people with disabilities. His e-mail address is mvolkman@nycap.rr.com.