Corey Baker, a young man, a 17 year old teenager with Autism was beaten at Austin State Institution.
He has the bruises to prove it. Bruise pics and link to story You can read the articles in the paper. The articles may have been posted on your disability rights list serve. I know the story was posted on the Community Now! List serve…with little to no response. It like this huge wet blanket. A nasty wet blanket thrown over me. Smothering me. Dragging me down, holding me down. Having hard time breathing. I am being driven to drink a glass of wine, watch mindless TV and just let it go. Just another beating. Yet another one. And I know. I know, there is one happening right now as I write. It is eight pm now, which means the night shift, is in full swing at our ridiculously titled 13 State Supportive Living Centers. The night shift. A time of terror for people we will never know. The night shift. Poorly trained people under supervised, poorly educated, given the power to let people live or die. The whiff of this kind of power is stagnant and rank. An unholy place where evil can happen and does.
I am sickened by this most recent beating. My heart breaks for this Mom who had no choice but to put her son in an institution, four hours away from his home. How many of you parents out there have been very close to making the horrible decision to place your child in an institution? I have. It is a dark place.
I know people that have had to make decisions to put their family at risk to keep their kid out of an institution. They hold on, hold on, hold for that damn slot to come open. Some cannot hold out and have only one choice: An Institution. I cannot and won’t sit in judgment of families who have to place their child in an institution because their child does not have the support he needs to live at home. This decision is personal and horrible.
And what about Corey? Mom having to make a tough decision is one thing. But, what about Corey? According to the newspaper, he was recently moved from his home in Colorado where he lived with his Grandmother to Texas to live with his Mom. His whole world was completely changed. For any young person, this is difficult. If you have Autism, it can be totally overwhelming. Corey was asked to change his life and when he got to Texas, other than the hellish heat, he most likely got nothing. No supports, nothing. Oh, yeah. Wait for 8-12 years to get a waiver slot, or go into an institution.
Where is the outrage? I hear nothing.
I am not going to sit quietly. I am not. Silence is complicit with the evil. If I am quiet, then I am complicit. You too, for that manner.
And to clarify, we must get everyone out of state institutions that want out and develop a long range plan to close the institutions no longer needed( I mean for God’s sake, even DADS says it will cost almost a half a billion dollars just to keep the buildings maintained over the next five years). This plan must take steps to return any money garnished from closures to fund the waiting list, so people like Corey aren’t put in harm’s way because they have no other choice. That is it. Simple and to the point. Get em out, close the ones we don’t need, shift money to those waiting.
Corey could have very easily ended up like Michael Nicholson in Lubbock. justice4michael.com Dead. Strangled and beaten. Tortured. It appears that Michael had Autism as well. Seems like in Texas institutions, behavior programs for people with Autism include systematic torture.
The Wave is coming. The Autism wave is coming. It is a tsunami. If we don’t fix things now, and this mean creating a system of supports for people with autism to live in their communities, then our institutions will be full. We will have to build another 13, maybe 30.
The message is about balance and real choice.
I started out with this whatever it is I am writing talking about the “Wet Blanket”. It is evil this blanket that will give us permission to be complacent. Every Corey, is my own child, is Michael Nicholson, is Haseeb Chishty, is, is, is. We have to fight the complacency of our daily lives. The lives where we are just trying to get through the day with a child that is tough. Trying to keep a job, trying to have a life, keep a marriage together or struggle to pick up the pieces when it fails. Getting through days where our old friends don’t come by anymore or family is distant and no one really understands. When we don’t have time for our other kids or our child with a disability has his heart broken because of her difference or, or, or…
As hard as we struggle today, we must find a moment to invest in the future of our children. I know many of you may have young children and that every night when you drop without a huge crisis is a good day. I have met so many wonderful people who struggle and give up so much for their children, who have a vision that their baby has a gift to give. And we all need make sure she is present in her community to share that gift.
I know it is asking a great deal of you to step up and do something. It may seem so far away that anything you do now can make a difference. The future of our children is smack in the middle of what we do today. There are 10s of thousands of people waiting on waiting lists. Quality community services and supports can be spotty. Finding exceptional behavioral support is really hard to find in Texas. You can make a difference by being a part of organized action. Action as simple as a phone call delivered at the right moment to the right legislator, an email, a visit to your State Rep or Senator with a group of other families. Bring your kids!
find your Texas legislator link
And for every call or email or whatever you do, it will keep you from the horrors of complacency, the temptation to ignore Corey because all of this is so overwhelming and nothing seems to change and what can I do anyway?
You can act. You. can. act. And when you rest or have a moment of calm you will know that that moment, on that day, you acted. On that day, you started a savings account paid out in action for your kid’s future.
Several advocate groups are planning a news conference and Rally on September 1st, the beginning of Texas’ new fiscal year to stand for community services..
Texas has a 100,000 people waiting for community services. But they keep dumping more and more money into these institutional hellholes. 1/3 of all funds already go to these institutions, which only serve 9% of folks with disabilities in the state.
Plan to meet September 1st.
Write/fax/visit your legislators. Make sure they know your story.
Get ready to educate these legislators more. Because they must know our kids are valuable members of our communities. And we are not supposed to live in a world where we are forced to lock them away.
Contact Community Now! (communitynowfreedom@gmail.com) Join our list serve or one of our Coalitions. This upcoming Legislative Session will be bloody. Our state faces a huge budget deficit and our children are often the first to get something taken away from them. We are 100,000 strong. Those of us on waiting lists, our families and friends await their shot at the American Dream. This Sleeping Giant has to wake up and be heard with a loud voice calling for equity, choice and the immediate end to a system build on blood, graft, and the backs of innocents.
Choose Freedom,
Ginny
Showing posts with label community. Show all posts
Showing posts with label community. Show all posts
Wednesday, August 18, 2010
Thursday, May 27, 2010
Report faults Texas treatment of mentally disabled
link here
By JEFF CARLTON Associated Press Writer © 2010 The Associated Press
May 27, 2010, 4:17PM
AUSTIN, Texas — A mentally disabled man with feces on his hands and legs was found shoeless and pantless wandering through a field in 14-degree weather. Officials say overwhelmed staffers at the state institution where he lived were occupied with other assignments.
A report released Thursday examining conditions at the Lubbock State Supported Living Center found more problems with a state-run facility a year after Texas lawmakers agreed to spend $112 million to improve conditions under threat of a Justice Department lawsuit. The federal government had documented widespread mistreatment of the mentally disabled in Texas.
Among the problems cited by independent monitors at the Lubbock facility was a critical shortage of nurses, resulting in significant medication errors. The facility has 50 vacancies in its nursing department, which is budgeted for 105 employees.
The report also says the Lubbock center has a 60 percent annual turnover rate among employees who directly care for the mentally disabled. Low wages make it difficult to find loyal employees, officials acknowledged. Staffers who work directly with mentally disabled residents make about $22,400 a year in Lubbock.
"This is not easy work, and the pay is not extraordinarily high," said Chris Traylor, commissioner of the state agency that oversees Texas' 13 institutions. "In order for staff to be retained in this work, you have to have a heart for what you are doing."
At least 13 workers have been fired since July for the abuse, neglect or exploitation of residents, according to the report. A member of the monitoring team called the abuse hot line to report neglect of a female resident who appeared to need help. When taken to the hospital, she was diagnosed with a urinary tract infection, an infection in her mouth and pneumonia.
The monitoring team criticized the school for having six workers caring for 20 residents, "all of whom were totally dependent on staff for every activity of daily living."
Medical record keeping was another problem. In one case, a Feb. 24 abdominal x-ray of a resident showed a coin in the lower intestine, but it was not in the resident's medical record and went unreported to the medical team until March 17.
Other problems include grouping too many residents with behavioral issues together, creating tired workers by forcing them to work mandatory overtime, high levels of aggressive incidents among residents and significant underreporting of medication errors.
The report was not entirely negative. It praised the Lubbock facility for its staff's knowledge on reporting abuse and neglect and efforts to serve residents in an integrated setting. It also said communication between medical departments was impressive.
The report was based on monitoring done during a one-week period in mid-March.
The monitors were permitted in the facility as part of an agreement with the Justice Department. It resulted from a series of federal investigations that found that at least 53 deaths from September 2007 to September 2008 were from conditions considered preventable, such as pneumonia, bowel obstructions or sepsis, indicating lapses in proper care.
The Lubbock report and others across the state are considered baseline reports. The institutions will be inspected every six months beginning in July to make sure they are in compliance with the Justice Department settlement. Texas has until the end of 2013 to bring their facilities into compliance.
"It does instill us with a sense of urgency," Traylor said. "We are focused on long-term improvements that will last long after the settlement agreement is concluded."
The 13 institutions are home to about 4,300 residents with significant intellectual and developmental disabilities. The facilities employ nearly 13,000 people.
___
Associated Press writer Jim Vertuno contributed to this report.
Saturday, May 8, 2010
N.J. disabled, workers debate closing of five developmental facility
http://tinyurl.com/2ar3dbe
By Susan K. Livio/Statehouse Bureau
May 07, 2010, 6:49PM
TRENTON — Anticipating action soon on a controversial bill that calls for closing five of the seven institutions for people with developmental disabilities, hundreds of families, disabled people and state and private workers today appeared before a special legislative panel to debate the future without these facilities.
Some who used to live in these institutions, also known as developmental centers, pleaded with legislators to allow more people to leave and lead more independent lives.
"I am happy living in the community, I have my own apartment, I have a cat, I have a boyfriend,'' said Adelaide Daskam of Plainfield, who left the North Jersey Training School 31 years ago. Like her, she said, "A lot of my brothers and sisters are glad they have their freedom.''
Carol Mastropolo, president of the New Lisbon Developmental Center Family and Friends organization, said her son "loves'' where he has lived for the last 29 years.
"Some people are under the impression they languish in the developmental centers, but he is so busy, He goes to a workshop every day to make some money, he participates in the Special Olympics, he goes to basketball games, baseball games ... he is happy here,'' Mastropolo said of the facility, located in Burlington County.
Don Klein, executive vice president of Local 1040 Communications Workers of America, the union that represents many developmental center workers, warned lawmakers of "unscrupulous companies out there that if they do not turn a profit they leave and abandon clients.''
Experts say people with developmental disabilities - who often have serious medical and behavioral problems - need a continuum of care - group homes, supervised apartments and developmental centers.'
It is not clear when either the Assembly and Senate human services committees will hold formal hearings on the bill, (A1673/S811), calling for the closure of any developmental centers. But the chairs of both committees who held the four-hour meeting said they wanted input from the people who would be affected by the vote.
“This hearing is a tremendous starting point for everyone to work together to ensure every developmentally disabled person in New Jersey gets the services they need,'' Assembly Human Services Committee Chairman Valerie Vainieri Huttle (D-Bergen) "This is a difficult issue and one that won’t be easily solved, but it’s also one we must confront.''
Lowell Arye, executive director of the Alliance for the Betterment of Citizens with Disabilities, a lobbying and advocacy group for community home providers, said housing options outside of institutions are slim because the state has for too long pocketed the federal Medicaid reimbursement that comes from providing community housing. In fiscal year 2007, for instance, the state received $194 million in federal funds. Yet Treasury officials allowed only $50 million over three years to be used to support and expand community housing. "The other $144 million were used by the state for other purposes,'' he said.
Deborah Spitalnik, executive director of the Elizabeth Boggs Center on Developmental Disabilities, urged lawmakers to "consolidate and rebalance the system" by using the money saved by closing developmental centers to fund smaller community housing and providing more services to people living with their families. Some 70 percent of the people with disabilities like autism and mental retardation live in their family home, and get little in the way of services from the state.
"No one is disputing the needs of people in developmental centers, But there are people who have the same needs who are living with their families.'' Spitalnik added, noting that parents and siblings are getting up in the middle of the night to change diapers, or are using feeding tubes and ventilators to take care of their loved ones.
Sen. Joseph Vitale (D-Middlesex) vice-chairman of the Senate Health Human Services and Senior Citizens Committee, called the hearing "a great first step in creating an overdue dialogue on how to improve services for people with developmental disabilities.'' They "deserve our respect, and they deserve a level of care and support which is appropriate and meets their personal care needs,'' he said.
Monday, February 1, 2010
Death at Lubbock State School center of Texas statewide controversy
January 27, 3:41 PM
Dallas Disability ExaminerSteve Carter
Sunday, January 31, 2010
James "J.T." Templeton
By Christina Rosales
AMERICAN-STATESMAN STAFF
Updated: 12:31 a.m. Friday, Jan. 29, 2010
Published: 9:56 p.m. Thursday, Jan. 28, 2010
James "J.T." Templeton, born with cerebral palsy and housed for 30 years in a Texas mental institution, wished for an ordinary life. But his advocacy for those with disabilities made his life extraordinary, his friends said.
Templeton died Monday . He was 59.
"Working with him helped develop and open my eyes to the civil rights struggle that people with disabilities are fighting," said Spencer Duran , a project specialist with the Accessible Housing Austin advocacy group.
Templeton moved out of the Austin State School in 1986, following a landmark federal lawsuit filed in 1974 against what was then the Texas Department of Mental Health and Mental Retardation. In the 1990s, he was part of a group that sued the City of Austin to make parks and facilities more accessible. He joined protesters who took over former Gov. Ann Richards' office in September 1991 to urge lawmakers to spend money for state schools on community-based initiatives for the disabled instead.
His close friend Stephanie Thomas said Templeton spoke to numerous lawmakers, including a U.S. Senate committee, and became a "voice for those with disabilities."
Templeton had numerous health problems, including respiratory infections. His partner of 14 years and fellow activist, Karen Greebon , died in 2005.
"He taught me a lot about how people with speech disabilities are not paid attention to," Thomas said. "Anyone can have opinions about how they want to live. They might not write a doctoral thesis about it, but they can make decisions for themselves."
Thomas said Templeton had a fierce activist spirit but a gentle soul. Duran said Templeton was the voice of reason and experience in pushing for affordable housing on Accessible Housing Austin's board of directors.
"People with disabilities are thought of as a barrier to affordability," Duran said. "They have been excluded in the development process."
Thomas said Templeton shared his story of being dependent on and discouraged by workers at the Austin State School who told him he could not make it in the "real world" so lawmakers could see how their decisions affect real people.
"His advocacy for himself and other people and getting out of the state school was an uphill battle," Thomas said. "He looked toward what he wanted to do and kept working for it."
crosales@statesman.com; 445-3766
Monday, January 4, 2010
Secret film uncovers 'disabled hate crime' in Wales
(link)
Footage of attacks on disabled people and their property was recorded for the programme
Some disabled people in Wales are suffering abuse and threats for no other reason than their disability, an investigation by BBC Wales has found.
Secretly recorded footage for the documentary Why Do You Hate Me? shows a wheelchair user being mocked and threatened in a bar.
In another incident a mother and daughter film an attacker smashing every window on their mobility car.
In Wales in 2009, police recorded 116 such incidents, with 18 convictions.
The programme, to be shown on BBC One Wales on Monday evening, reveals how many such incidents go unrecorded.
 |  I think we haven't collectively picked them up and investigated and prosecuted them in the way we should  Kier Starmer QC, director of public prosecutions |
The Director of Public Prosecutions, Kier Starmer QC, admitted that the justice system did not always get it right when dealing with so-called disability hate crime.
He said: "I think there are lots and lots of incidents of disability hate crime.
"I think we haven't collectively picked them up and investigated and prosecuted them in the way we should."
 A CCTV camera catches a vandal attacking Irene Miles' vehicle |
The programme is presented by Simon Green, a wheelchair user from Bridgend, who secretly filmed a couple of his nights out to expose the hostility and abuse he sometimes experiences.
During one evening he was confronted by a group of men who verbally abuse him, swearing at him and calling him a "cripple", and suggesting he could really walk.
Mr Green, who has been a wheelchair user for six years, says during that time he has been physically, as well as verbally, assaulted because he is disabled.
'Nuisance to them'
And though the law has got tough on people who abuse others on the grounds of their race or religion, the attitude towards often low-level but continued abuse of disabled people seems far behind, the programme found.
Mr Green also met Irene Miles, 77, who was born disabled. She and her daughter Lorraine, who is her full-time carer, say they have suffered years of abuse at their Newport home.
 Simon Green went under cover to film for the programme |
The most recent attack was captured by a CCTV camera and shows a hooded man running around their vehicle, smashing every window before disappearing down the road. The vehicle is a lifeline for the family.
They said they have contacted police 60 times in the last five years, but only this latest incident, which happened last November, has been categorised as a hate crime.
Lorraine said: "I feel as though the police think we're a nuisance to them. I think now they're sitting up and taking note but the help for me and my mum has come far too late."
The family believe their case has similarities with the horrific story of Fiona Pilkington.
She killed herself and her disabled daughter, 18, in Leicestershire in 2007 after years of persistent abuse.
Gwent Police are now reviewing the handling of Lorraine and Irene's case.
Chief Supt Paul Symes says, "I will do my upmost to ensure that this is not a Pilkington case for Gwent Police. I'm aware of what the learning was within Pilkington, part of that involved some criticism around some perception that agencies weren't working together."
Campaigners say disability hate crimes are too often unreported by victims and under recorded by police but that this needs to change.
Why Do You Hate Me? is shown on Monday, 4 January on BBC One Wales at 2030 GMT.
Sunday, August 30, 2009
facts about Lubbock SS
101 cases of confirmed abuse/neglect, and 2 investigations by the Lubbock Police Department. Only one case MAY result in prosecution. WHO else sees a problem here?
"We wish we had a crystal ball into the actions people take, but we take every possible step we can to train people and set an expectation that we do not tolerate abuse or neglect."
Laura Albrecht
Spokeswoman for the Texas Department of Aging and Disability Services
Lubbock State School timeline
• August 1969: The Lubbock State School opened.
• June 2005: U.S. Department of Justice investigated conditions at the Lubbock State School.
• December 2006: Justice Department reported multiple deficiencies at the school.
• May 2009: Justice Department and the state reach a $112 million settlement on what changes should be made and how.
• June 2009: Resident Michael Nicholson died at the school.
• July 2009: Six employees fired in relation to Nicholson's death.
• August 2009: Nicholson's death ruled a homicide.
Funding for the Lubbock State School
• 2005: $28.9 million
• 2006: $31.4 million
• 2007: $32.3 million
• 2008: $37.0 million
• 2009: $39.5 million
Employees at the Lubbock State School
• 2005: 825
• 2006: 792
• 2007: 776
• 2008: 781
• 2009: 785
Residents at the Lubbock State School
• 2005: 341
• 2006: 304
• 2007: 289
• 2008: 266
• 2009: 243
Numbers of abuse and neglect cases and firings
• 2005: 27 confirmed reports of abuse and neglect and 14 related firings.
• 2006: 11 confirmed cases of abuse and neglect and four related firings.
• 2007: 30 confirmed cases of abuse and neglect and 18 related firings.
• 2008: 35 confirmed cases of abuse and neglect and 27 related firings.
• 2009 to date: 26 confirmed cases of abuse and neglect and 24 related firings.
"We wish we had a crystal ball into the actions people take, but we take every possible step we can to train people and set an expectation that we do not tolerate abuse or neglect."
Laura Albrecht
Spokeswoman for the Texas Department of Aging and Disability Services
Lubbock State School timeline
• August 1969: The Lubbock State School opened.
• June 2005: U.S. Department of Justice investigated conditions at the Lubbock State School.
• December 2006: Justice Department reported multiple deficiencies at the school.
• May 2009: Justice Department and the state reach a $112 million settlement on what changes should be made and how.
• June 2009: Resident Michael Nicholson died at the school.
• July 2009: Six employees fired in relation to Nicholson's death.
• August 2009: Nicholson's death ruled a homicide.
Funding for the Lubbock State School
• 2005: $28.9 million
• 2006: $31.4 million
• 2007: $32.3 million
• 2008: $37.0 million
• 2009: $39.5 million
Employees at the Lubbock State School
• 2005: 825
• 2006: 792
• 2007: 776
• 2008: 781
• 2009: 785
Residents at the Lubbock State School
• 2005: 341
• 2006: 304
• 2007: 289
• 2008: 266
• 2009: 243
Numbers of abuse and neglect cases and firings
• 2005: 27 confirmed reports of abuse and neglect and 14 related firings.
• 2006: 11 confirmed cases of abuse and neglect and four related firings.
• 2007: 30 confirmed cases of abuse and neglect and 18 related firings.
• 2008: 35 confirmed cases of abuse and neglect and 27 related firings.
• 2009 to date: 26 confirmed cases of abuse and neglect and 24 related firings.
Thursday, July 16, 2009
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.
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.
Sunday, June 28, 2009
State schools have room to improve
By Matt Phinney (Contact)Saturday, June 27, 2009
(Link to article)
Supporters of state-supported living centers say a new law providing more oversight to the 13 facilities will go even further to protect the thousands of residents who live in them, while at least one advocacy group says a need continues for sweeping change to the state system.
This month, Gov. Rick Perry signed a bill that includes random drug-testing for employees, harsher penalties for abuse and neglect of residents and more surveillance at the facilities, which previously have been known as state schools. Some of the measures already have been in place in the state-operated facilities, said Cecilia Fedorov, media officer with the Texas Department of Aging and Disability Services.
That agency oversees the state facilities and regulates private immediate-care facilities for people with mental retardation as well as contracts with providers for community-based services, she said.
Among other things, the new legislation allows for enhanced training on how to recognize possible abuse or neglect, and what the reporting requirements are, as well as the ramifications of not reporting or preventing abuse and neglect.
“I think (the law) is just added benefits,” Fedorov said. “We already have a lot of safeguards in place, and this will allow us to screen even further. The top priorities at all times is the health and quality of life for our residents. This allows us to strengthen that.”
In addition to the law, 1,190 new employee positions will be open statewide for the centers.
That number hasn’t been broken up by individual facilities, Fedorov said.
About 4,600 people live in the 13 state facilities, according to The Associated Press, which is more than six times the national average.
The San Angelo State School, in Carlsbad, had 276 clients as of March 31, and had 760 employees as of April.
Perry declared state school reform a legislative emergency during the most recent session after state lawmakers reached a $112 million settlement with the Department of Justice, which documented widespread mistreatment of residents and alleged their civil rights were violated.
The agreement developed from a series of federal investigations that found that at least 53 deaths statewide in the system from September 2007 to September 2008 were from preventable conditions, indicating lapses in proper care.
After that report came out, there was talk of downsizing, consolidating and even closing some state-supported living facilities, said state Rep. Drew Darby, R-San Angelo, a member of the state’s Human Services Committee.
The talk eventually turned from downsizing to providing more resources to help the facilities protect their residents, led in part by families of residents at the facilities, Darby said.
“I think right-thinking people started working to come up with solutions that addressed the concerns of the Department of Justice and those in the community who believe there needs to be more resources,” Darby said, “while being sensitive to the many hundreds of parents and professionals that believe state-support living institutions are the best place for their loved ones.”
However, Jeff Garrison-Tate with the advocacy group Community Now! said there is no need for 13 state facilities and calls for complete reform of the system. The group works to ensure that people with disabilities who reside in state institutions get a chance to live in community settings.
His daughter has been on a waiting list for years, hoping to enter a community service center, which includes group homes and foster care.
Garrison-Tate said many residents at the state facilities do not have guardians and do not want to be in such large settings.
He said there is a waiting list of 88,000 people wanting to live in community service centers.
“I believe that everyone who wants to leave should have the opportunity to do so per federal law,” he said. “And whenever every one of those folks that wants out gets out, we need a long-range strategic plan to determine if we need these facilities in Texas. I believe we would not need that many.”
A report released this month indicated 27 people were fired or suspended at the San Angelo facility during the 2008 fiscal year. One of the 27 firings or suspensions was considered a Class I violation, physical or sexual abuse that may cause serious physical injury. Thirteen were Class II, which are nonserious physical injuries or exploitation, three were for emotional or verbal abuse and 10 were for neglect.
Fedorov said the number of people disciplined show the agency’s strict employee code of conduct is working to protect the residents.
The new law is a good start, Darby said, but the key for the state is to continue to provide the facilities with the resources to protect the residents.
Garrison-Tate disagrees. He said that while there are many good employees at the institutions, “There is a culture of abuse and neglect in these facilities that goes beyond any amount of money that we dump into these places,” he said.
“History shows we put money into this, and it doesn’t work.”
Garrison-Tate said the law includes worthwhile provisions, such as creating an independent ombudsman position and increasing penalties. However, he doubts that adding cameras in common areas will make a significant difference because most abuse takes place in bedrooms or bathrooms, where cameras cannot be installed.
Fedorov called the cameras “another layer of security. The more eyes you have looking at the situation, the less likely you are going to have abuse or neglect,” she said, adding that the cameras won’t be added quickly because the process must go out for bids, and some construction work will be required to install the systems.
Fedorov also said the state has increased by thousands the number of slots available for people who receive community-based services, she said.
Fedorov described the hiring process as “pretty intense,” including a lengthy orientation, security and background checks and training.
The employee turnover is high during the first six months of employment, which is a probationary period, she said.
The turnover rate is lower after the second year of employment, she said.
Many people who last more than two years make a career out of working at the facility, she said.
PROVISIONS OF SENATE BILL 643
Following is a list of provisions in a new law designed to protect residents at the state’s 13 state-supported living centers.
Establishes the Office of Independent Ombudsman and a new assistant commissioner who will oversee all state-supported living center operations.
Enhances abuse and neglect investigations by notifying and including the Health and Human Services’ Office of the Inspector General in criminal investigations.
Creates a hotline number that is linked to the SSLC Ombudsman’s office to report allegations of misconduct.
Requires video surveillance cameras in all common areas to prevent, deter and detect abuse and neglect.
Requires FBI fingerprint background checks and random drug-testing on employees.
Increases penalties for employees who abuse or neglect residents, or fail to report abuse or neglect.
Requires the Department of Aging and Disability Services to contract with an independent patient safety organization to conduct mortality assessments to determine if deaths could have been prevented.
Helps ensure that the facilities are in compliance with the recent U.S. Department of Justice settlement agreement.
Renames the state schools to SSLCs to more accurately depict the residential care services provided to residents.
Designates the Mexia State School as the forensic SSLC to house high-risk, court-committed residents.
Source:Source: Governor’s office
Friday, June 26, 2009
Head of agency in charge of Texas state schools plans to retire
link to article
By JIM VERTUNO Associated Press Writer © 2009 The Associated Press
June 25, 2009, 4:39PM
AUSTIN, Texas —
The head of the Texas agency in charge of the state's troubled institutions for the mentally disabled announced Thursday she is retiring, effective Aug. 31.
Department of Aging and Disability Services Commissioner Adelaide "Addie" Horn has led the agency since February 2006.
The institutions were the target of a federal civil rights review following allegations of abuse and neglect of the mentally disabled. State lawmakers reached a five-year, $112 million settlement with the U.S. Justice Department that requires the state to improve living conditions and medical care.
State lawmakers recently passed new security measures at the 13 state supported living centers after a 2008 report outlined widespread mistreatment of residents. Dozens of people have died under questionable circumstances and hundreds of employees have been disciplined for mistreating residents.
Texas has about 4,600 residents living at the large institutions.
In a statement, Horn said, "It has been my privilege, and one that I have never taken for granted, to have served individuals who are aging and have disabilities."
Horn was director of long-term care services at the state Health and Human Services Commission before being name first deputy commissioner of DADS. She was put in charge of the agency on Feb. 1, 2006.
Health and Human Services Commissioner Albert Hawkins' praised Horn's "strong leadership on behalf of individuals who need her agency's services, no matter the setting or disability."
But some advocates for the disabled sharply criticized her tenure.
"Commissioner Horn is ultimately responsible for the operations of state institutions in Texas and has failed miserably in this regard. Her retirement ends an era of arrogance and gross negligence in the management of the safety and civil rights of our most vulnerable Texans," said Jeff Garrison-Tate of the advocacy group Community Now!, which has called for Texas to close the large institutions.
Spurred by the reports of abuse and neglect, lawmakers and Gov. Rick Perry moved to improve security and oversight at the institutions. Earlier this month, Perry signing into law a bill that requires video surveillance in common areas. It also gives new powers to the state Office of Inspector General to help local prosecutors pursue cases of abuse, neglect or exploitation. Staff would be subject to drug tests and criminal background checks.
"Commissioner Horn has been a tireless advocate for Texans with disabilities," said Sen. Jane Nelson, R-Flower Mound, chair of the Senate Health and Human Services Committee that drafted many of the changes.
"We are grateful for her service on behalf of the State of Texas and, in particular, our most vulnerable citizens," Nelson said.
Wednesday, June 24, 2009
Failing Darla
Texas Monthly July (link here)
When you live here long enough, you become inured to certain things that might otherwise drive you crazy, like the fact that we rank, among all states, near or at the bottom of too many lists: dead last in health insurance coverage, forty-ninth for children living in poverty, well below average in the incarceration of nonviolent teenagers, and so on. So when the Legislature gets infatuated with a nonpressing issue—this session it was voter ID—instead of trying to improve dire situations that have persisted for decades, the public response isn’t outrage but a collective shrug. It’s our way to embrace the bright side of the Texas myth (independence, individualism) while ignoring the dark side, which leaves the less fortunate to fend for themselves. Some of these evils have been with us for so long that we’ve come to believe they’re intractable, even though other states have proved they aren’t. And when outsiders say we’re backward in our nonapproach to social ills—what else would you expect from Texas?—the historic response is to circle the wagons in collective defensiveness.
Those were the kinds of thoughts running through my mind this spring when I happened to meet Darla Deese, who is fifty and “developmentally disabled” (the polite term for “mentally retarded”), at the precise moment, after decades of abuse and neglect, that the Legislature had budgeted $507 million for care of people like her. “It’s going to create a lot of opportunities for people . . . to stay in their homes or a community setting,” state representative John Zerwas, of Richmond, jubilantly told the Houston Chronicle. If only that were true. Of the 66,000 developmentally disabled Texans who have been waiting up to eight years for services in their communities—some trapped in institutions, some with families stressed to the max—a mere 7,000 will have their needs met. It is a measure of how bad things are (we rank forty-eighth in funding for the developmentally disabled) that some who fought for the increased appropriation and accompanying reforms are grateful for what they got.
In truth, most people do not care about the fate of the mentally retarded. Adults with developmental difficulties are children in grown-ups’ bodies, which means that they are expensive and time-consuming to care for. In Texas, they and their families have two choices: institutions, which, at best, serve as human warehouses, or community services, which are available to only a lucky few. “I believe waiting lists are immoral,” says state senator Judith Zaffirini, of Laredo, who has done more than any other legislator for the developmentally disabled. In general, the strategy of our state government has been to lurch from crisis to crisis—or lawsuit to lawsuit—while maintaining a dysfunctional system that is outdated, underfunded, and incomprehensibly bureaucratized.
The $507 million came about in response to a 2008 civil rights investigation of Texas’s thirteen state schools by the U.S. Department of Justice. The findings read like something out of a fifties horror movie: residents put in straitjackets, overly and improperly medicated with psychotropic drugs, and worse. “More than 800 employees across all 13 facilities have been suspended or fired for abusing facility residents since fiscal year 2004,” the report notes. “Over 200 of the facilities’ employees reportedly were fired in fiscal year 2007 alone for abuse, neglect or exploitation of residents . . .” Injurious falls went unnoticed, claims of rape unprosecuted. “The mortality rate for some of the facilities raises serious concerns regarding the quality of care that facility residents receive. In recent years, one of the facilities averaged two resident deaths per month.” It’s worth noting that the now infamous “fight club” scandal at the Corpus Christi State School, in which employees pitted residents against one another, occurred months after the feds released their report. In other words, at least one school investigated and found wanting was in no hurry to clean up its act.
This fact would come as no surprise to Darla and her sister and lifelong advocate, Esther Hobbs, who is sixty. The women now share a sun-drenched house in the Montrose section of Houston, where Esther runs a public relations business. New people sometimes make Darla nervous; she shook her head and was reluctant to make eye contact when Esther introduced us. Until a few years ago, she slept with one eye open and often threw her hands up in the air, as if warding off an attacker. “We don’t know what she’s been through,” Esther said of Darla’s 31 years in the state’s care.
Darla’s story is typical of many developmentally disabled Texans’. She was born in Beaumont, into a strict Southern Baptist family of modest means. Her father was a car salesman, her mother a homemaker. A beautiful girl with blue eyes and blond ringlets, she was the last of four children. Her mother had had a medical emergency when she was pregnant that resulted in a loss of oxygen to Darla’s brain. But her oldest sister was more than willing to take her on. “Darla was like my baby doll,” Esther told me. “From the time she was born she was my responsibility.” Even so, this was the late fifties and early sixties, when there was much shame and little hope associated with mental retardation. The family’s doctor urged that Darla be institutionalized, and her parents agreed. “I came home one day and she was gone,” Esther told me. “They didn’t talk about things then.” Darla had been sent to the Mexia State School. She was five.
Her decline there was as predictable as her interminable loneliness. She lost the ability to speak in anything but single words and almost always seemed afraid. When Esther came to visit with her parents, Darla leaped into her arms and wept wretchedly whenever it was time for her family to leave. Then, less than a year into Darla’s stay, her parents got a middle-of-the-night call from a state school worker. “I’ll probably lose my job over this,” she told them, “but your daughter doesn’t belong here.”
For the next year Darla lived at home and attended special-education classes at a Beaumont public school. Esther left home at eighteen and not long after discovered that her parents had moved her sister to the new state school, in Richmond, just south of Houston. Darla would spend the next thirty years there. Initially she lived in a dayroom with thirty or so girls, sleeping in a cubicle and sharing hard wooden chairs. “They had nothing to write on, nothing to read,” Esther said. Darla came home every other Sunday, on holidays, and on her birthday, but she was more like a wild animal, Esther remembers, than a human being. Often she had cuts and bruises; when Esther asked staff what had happened, they always said that Darla had fallen down. Who really knew? The turnover among her direct care staff was high; most worked for minimum wage and had little or no training. Around age twelve, with her parents’ assent, Darla had a hysterectomy; there was sexual activity at the school, they were told, and no one wanted her to get pregnant.
In 1991, when Darla was 32, she was moved to another part of the school. At that point, her female caretakers were replaced by men; even more worrisome to Esther was the fact that some prison inmates purported to be mentally retarded had been shipped to state schools in an effort to ease prison overcrowding. On visits Esther sometimes found her sister’s face smeared with makeup or bruised. Darla developed a fear of trees, which led Esther to suspect that she was being raped in the woods on school property. After Darla’s caseworker reported that she had been sexually abused, Esther complained repeatedly to the state school staff and to the Fort Bend County Sheriff’s Department, but to no avail. (This outcome is unsurprising in cases involving the developmentally disabled: Claims by them or on their behalf are routinely seen as lacking credibility, even though the Justice Department’s Office for Victims of Crime estimates that nearly 83 percent of developmentally disabled women will be sexually abused in their lifetime.) About a year later, Esther was called by a caseworker who reported that Darla had a human bite mark on her back. Esther went to the school looking for her, and she found her huddled in a corner, inconsolable and “beaten beyond recognition.” “She was the saddest person in the whole wide world,” Esther told me.
By the mid-nineties, Esther could no longer live with the situation; she persuaded her mother to allow her to become Darla’s guardian. By then, her own health was suffering—her skin itched as if it were on fire—and when her doctor diagnosed stress and asked about the possible causes, Esther told him about Darla. She remembers his response as if it were yesterday: “Everyone in the medical profession knows what they do to those kids. You need to go get your sister right now.” She did. “It was two years before she would let me hug her,” Esther told me.
If this were a movie, Darla’s life would have taken a dramatic turn for the better. That’s not what happened. She joined the proverbial waiting list to take advantage of government funds and services, but it was eight years before she got any. In the meantime, Esther put together a patchwork of private day care programs, some of which kept Darla no safer than she had been at the state school (a large bruise on Darla’s inner thigh was diagnosed as, yes, evidence of repeated sexual assault). For several years, out of desperation, Esther ran her own school, but she had to close when grants dried up.
It doesn’t have to be this way. Zaffirini and other advocates believe that $1 billion is needed to solve some of Texas’s worst problems, like inadequate training and low staff pay at state schools. More important, though, is the way money is allocated: Too much of it goes only to large, outdated, expensive institutions instead of smaller, cheaper-to-operate community-based programs, which many developmentally disabled people and their families prefer. (The Mexia State School, for instance, is the largest employer in town, a problem for any politician who wants to improve care but remain in office.) Overall, says Zaffirini, it will take a change in the popular will to create a system—from home care to institutions, with many alternatives along the way—that can help the developmentally disabled live decently and safely, earning money and contributing to society.
Until then, the waste of human potential, and human life, continues.
When you live here long enough, you become inured to certain things that might otherwise drive you crazy, like the fact that we rank, among all states, near or at the bottom of too many lists: dead last in health insurance coverage, forty-ninth for children living in poverty, well below average in the incarceration of nonviolent teenagers, and so on. So when the Legislature gets infatuated with a nonpressing issue—this session it was voter ID—instead of trying to improve dire situations that have persisted for decades, the public response isn’t outrage but a collective shrug. It’s our way to embrace the bright side of the Texas myth (independence, individualism) while ignoring the dark side, which leaves the less fortunate to fend for themselves. Some of these evils have been with us for so long that we’ve come to believe they’re intractable, even though other states have proved they aren’t. And when outsiders say we’re backward in our nonapproach to social ills—what else would you expect from Texas?—the historic response is to circle the wagons in collective defensiveness.
Those were the kinds of thoughts running through my mind this spring when I happened to meet Darla Deese, who is fifty and “developmentally disabled” (the polite term for “mentally retarded”), at the precise moment, after decades of abuse and neglect, that the Legislature had budgeted $507 million for care of people like her. “It’s going to create a lot of opportunities for people . . . to stay in their homes or a community setting,” state representative John Zerwas, of Richmond, jubilantly told the Houston Chronicle. If only that were true. Of the 66,000 developmentally disabled Texans who have been waiting up to eight years for services in their communities—some trapped in institutions, some with families stressed to the max—a mere 7,000 will have their needs met. It is a measure of how bad things are (we rank forty-eighth in funding for the developmentally disabled) that some who fought for the increased appropriation and accompanying reforms are grateful for what they got.
In truth, most people do not care about the fate of the mentally retarded. Adults with developmental difficulties are children in grown-ups’ bodies, which means that they are expensive and time-consuming to care for. In Texas, they and their families have two choices: institutions, which, at best, serve as human warehouses, or community services, which are available to only a lucky few. “I believe waiting lists are immoral,” says state senator Judith Zaffirini, of Laredo, who has done more than any other legislator for the developmentally disabled. In general, the strategy of our state government has been to lurch from crisis to crisis—or lawsuit to lawsuit—while maintaining a dysfunctional system that is outdated, underfunded, and incomprehensibly bureaucratized.
The $507 million came about in response to a 2008 civil rights investigation of Texas’s thirteen state schools by the U.S. Department of Justice. The findings read like something out of a fifties horror movie: residents put in straitjackets, overly and improperly medicated with psychotropic drugs, and worse. “More than 800 employees across all 13 facilities have been suspended or fired for abusing facility residents since fiscal year 2004,” the report notes. “Over 200 of the facilities’ employees reportedly were fired in fiscal year 2007 alone for abuse, neglect or exploitation of residents . . .” Injurious falls went unnoticed, claims of rape unprosecuted. “The mortality rate for some of the facilities raises serious concerns regarding the quality of care that facility residents receive. In recent years, one of the facilities averaged two resident deaths per month.” It’s worth noting that the now infamous “fight club” scandal at the Corpus Christi State School, in which employees pitted residents against one another, occurred months after the feds released their report. In other words, at least one school investigated and found wanting was in no hurry to clean up its act.
This fact would come as no surprise to Darla and her sister and lifelong advocate, Esther Hobbs, who is sixty. The women now share a sun-drenched house in the Montrose section of Houston, where Esther runs a public relations business. New people sometimes make Darla nervous; she shook her head and was reluctant to make eye contact when Esther introduced us. Until a few years ago, she slept with one eye open and often threw her hands up in the air, as if warding off an attacker. “We don’t know what she’s been through,” Esther said of Darla’s 31 years in the state’s care.
Darla’s story is typical of many developmentally disabled Texans’. She was born in Beaumont, into a strict Southern Baptist family of modest means. Her father was a car salesman, her mother a homemaker. A beautiful girl with blue eyes and blond ringlets, she was the last of four children. Her mother had had a medical emergency when she was pregnant that resulted in a loss of oxygen to Darla’s brain. But her oldest sister was more than willing to take her on. “Darla was like my baby doll,” Esther told me. “From the time she was born she was my responsibility.” Even so, this was the late fifties and early sixties, when there was much shame and little hope associated with mental retardation. The family’s doctor urged that Darla be institutionalized, and her parents agreed. “I came home one day and she was gone,” Esther told me. “They didn’t talk about things then.” Darla had been sent to the Mexia State School. She was five.
Her decline there was as predictable as her interminable loneliness. She lost the ability to speak in anything but single words and almost always seemed afraid. When Esther came to visit with her parents, Darla leaped into her arms and wept wretchedly whenever it was time for her family to leave. Then, less than a year into Darla’s stay, her parents got a middle-of-the-night call from a state school worker. “I’ll probably lose my job over this,” she told them, “but your daughter doesn’t belong here.”
For the next year Darla lived at home and attended special-education classes at a Beaumont public school. Esther left home at eighteen and not long after discovered that her parents had moved her sister to the new state school, in Richmond, just south of Houston. Darla would spend the next thirty years there. Initially she lived in a dayroom with thirty or so girls, sleeping in a cubicle and sharing hard wooden chairs. “They had nothing to write on, nothing to read,” Esther said. Darla came home every other Sunday, on holidays, and on her birthday, but she was more like a wild animal, Esther remembers, than a human being. Often she had cuts and bruises; when Esther asked staff what had happened, they always said that Darla had fallen down. Who really knew? The turnover among her direct care staff was high; most worked for minimum wage and had little or no training. Around age twelve, with her parents’ assent, Darla had a hysterectomy; there was sexual activity at the school, they were told, and no one wanted her to get pregnant.
In 1991, when Darla was 32, she was moved to another part of the school. At that point, her female caretakers were replaced by men; even more worrisome to Esther was the fact that some prison inmates purported to be mentally retarded had been shipped to state schools in an effort to ease prison overcrowding. On visits Esther sometimes found her sister’s face smeared with makeup or bruised. Darla developed a fear of trees, which led Esther to suspect that she was being raped in the woods on school property. After Darla’s caseworker reported that she had been sexually abused, Esther complained repeatedly to the state school staff and to the Fort Bend County Sheriff’s Department, but to no avail. (This outcome is unsurprising in cases involving the developmentally disabled: Claims by them or on their behalf are routinely seen as lacking credibility, even though the Justice Department’s Office for Victims of Crime estimates that nearly 83 percent of developmentally disabled women will be sexually abused in their lifetime.) About a year later, Esther was called by a caseworker who reported that Darla had a human bite mark on her back. Esther went to the school looking for her, and she found her huddled in a corner, inconsolable and “beaten beyond recognition.” “She was the saddest person in the whole wide world,” Esther told me.
By the mid-nineties, Esther could no longer live with the situation; she persuaded her mother to allow her to become Darla’s guardian. By then, her own health was suffering—her skin itched as if it were on fire—and when her doctor diagnosed stress and asked about the possible causes, Esther told him about Darla. She remembers his response as if it were yesterday: “Everyone in the medical profession knows what they do to those kids. You need to go get your sister right now.” She did. “It was two years before she would let me hug her,” Esther told me.
If this were a movie, Darla’s life would have taken a dramatic turn for the better. That’s not what happened. She joined the proverbial waiting list to take advantage of government funds and services, but it was eight years before she got any. In the meantime, Esther put together a patchwork of private day care programs, some of which kept Darla no safer than she had been at the state school (a large bruise on Darla’s inner thigh was diagnosed as, yes, evidence of repeated sexual assault). For several years, out of desperation, Esther ran her own school, but she had to close when grants dried up.
It doesn’t have to be this way. Zaffirini and other advocates believe that $1 billion is needed to solve some of Texas’s worst problems, like inadequate training and low staff pay at state schools. More important, though, is the way money is allocated: Too much of it goes only to large, outdated, expensive institutions instead of smaller, cheaper-to-operate community-based programs, which many developmentally disabled people and their families prefer. (The Mexia State School, for instance, is the largest employer in town, a problem for any politician who wants to improve care but remain in office.) Overall, says Zaffirini, it will take a change in the popular will to create a system—from home care to institutions, with many alternatives along the way—that can help the developmentally disabled live decently and safely, earning money and contributing to society.
Until then, the waste of human potential, and human life, continues.
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