The Arc of United States News

Forced to Fight
The Texas Tribune
by Emily Ramshaw and Terri Langford, Houston Chronicle
June 6, 2010

Workers at a center for distressed children provoked seven developmentally disabled girls into a fight of biting and bruising, while they laughed, cheered and promised the winners a precious prize: after-school snacks.

Four of the girls were injured, according to records obtained by The Texas Tribune and the Houston Chronicle. State officials learned of the incident at Daystar Residential Inc. in Manvel the day after it occurred, when a Daystar employee doing health checks found bite marks, scrapes and bruises on the girls’ bodies.

The fight was one of more than 250 incidents of confirmed abuse and mistreatment in residential treatment centers over the last two years, based on the Chronicle/Tribune review of state records.

But unlike last year’s scandal at the Corpus Christi State School, where staffers were found to have forced mentally disabled adults to fight one another, there were no impassioned calls for reform. No criminal indictments sought against the perpetrators. And no lawmakers publicly grilling a state agency about how it could have happened.

Instead, the two staffers at Daystar, a child residential treatment center located 30 minutes south of Houston, were quietly fired after the fight in 2008.

To this day, the names of the pair — a dorm supervisor and another female worker — are kept secret by the Department of Family and Protective Services, even though the center, contracted by the state to provide care, has received $16 million in taxpayer money since 2006.

“Why I’m outraged is, the department hid this from us,” said state Rep. Patrick Rose, D-Dripping Springs. “This is another example of us having to find out about systemic failures through the press, as opposed to pro-actively from the department. … We could’ve fixed this problem last session when we were addressing a very similar issue.”

Residential treatment center records reviewed by the Chronicle and the Tribune show state investigators confirmed hundreds of violations from mid-2008 through April of this year — at least 250 of them involving abuse, neglect and mistreatment. All of those centers remain in operation today.

Workers choked and punched kids to get them to behave. Children who were supposed to be supervised attempted suicide. Kids were threatened with corporal punishment and forced to strip down to their underwear so they wouldn’t run away. In some cases, residents engaged in sexual acts with peers, with staff members and, in one case, with a staffer’s relative.

In the past five years, six facilities — three of them in Houston — have been shut down or denied a license renewal. But it’s unclear exactly what triggers the closures; other facilities remain open or face no sanctions despite suicide attempts and other serious abuse incidents.

In the staged fight at Daystar in April 2008, state inspection records show the two employees gathered the seven “developmentally delayed” girls, ranging in age from 12 to 17, and forced them to fight.

DFPS investigated, confirmed the abuse and cited Daystar over several deficiencies — but didn’t put the facility on suspension or probation.

Daystar attorney John Carsey said the state’s conclusions are “misleading and frankly incorrect.” He said the company fired two female employees who failed to intervene in a shoving match between two girls — not seven — that resulted in some hair-pulling and nothing more.

“Nobody got hurt,” said Carsey, who declined to provide copies of the company’s internal investigation.

DFPS stands by its findings. “We are very disappointed in Daystar’s characterization of this very serious incident, and their criticism of our investigation,” said Sasha Rasco, DFPS’ assistant commissioner of child care licensing. “These employees staged a fight between these children, and cheered as the fight occurred. A medical examination found four of the girls were injured.”

DFPS did not revisit the fight club incident — or report it up the chain — in early 2009, when police stumbled onto cell phone videos of workers at the Corpus Christi State School forcing profoundly disabled residents to fight each other.

“Nobody ever came up from [DFPS] and told us,” said Jay Kimbrough, who was Gov. Rick Perry’s chief of staff when the Corpus Christi fight club news broke. “And 'fight club' was a magic phrase, a defined term at that point.”

The Corpus Christi fights, staged the same spring the Daystar incident occurred, brought inflamed criticism from those in the disability community, prompted Perry to place a moratorium on state school admissions, and led to the conviction of six workers on charges of injury to a disabled person.

The state poured money into the Department of Aging and Disability Services, which oversees state schools, to install security cameras and other safety measures.

DFPS “should’ve stepped up and said, ‘This is bad, this is evil, and we are holding everyone accountable,’” said Jeff Garrison-Tate, whose nonprofit Community Now! works for people with disabilities. “You think, ‘How could it get worse than the Corpus Christi fight club?’ Only in Texas could it get worse.”

Since 2006, residential treatment centers have received more than $300 million to care for the most troubled or disabled children taken into foster care. Children placed at a residential treatment center are there because basic care for them is not enough. They are likely to bear deeper emotional scars, and some, in social worker parlance, “act out, sexually.”

Others have turned to alcoholism or drug addition. Some struggle with depression or developmental disabilities.

“Each child in one of these facilities is troubled, typically with serious emotional disturbance and/or mental health issues,” explained DFPS spokesman Patrick Crimmins. “These centers are designed to provide treatment for them.”

The state contracts with about 80 residential treatment centers, nearly half of which are in the Houston area.

The state workers at the Corpus Christi State School were arrested and later convicted of felonies. DFPS officials say they referred the Daystar matter to local law enforcement. But both the Manvel Police Department and the Brazoria County Sheriff’s Office say they never received any notification.

DFPS refused to release the report it filed with law enforcement and said it couldn't prove notification was sent; the agency deletes all faxed records after 30 days.

The Chronicle/Tribune review of state inspection reports and other records revealed dozens of incidents of serious abuse and neglect, including physical beatings, and failing to report attempted suicides and allegations of sexual assault.

Unmonitored youth escaped, stole vehicles and started fires. Staff failed to report sexual contact among young kids, and provided others with alcohol and illegal drugs.

Workers punished kids with dangerous physical restraints or long periods of confinement — sometimes without their clothes. Among the incidents:

* At the Brookhaven facility in McLennan County, a child who was supposed to be monitored at all times left the room and attempted to hang himself with his shoelaces. A second child swallowed 30 psychotropic pills. Within months of those incidents, a staffer choked a child and struck him with a milk crate.

* At Houston’s Serenity residential treatment center, staffers forced residents to strip down to their boxers and take off their shoes to prevent them from running away.

* At the Avalon Center in Eddy, staff didn’t intervene when a young girl ran into the highway and yelled for oncoming traffic to hit her.

* A staffer slammed a door on a resident’s head at the Guardian Angels residential treatment center in Houston.

DFPS insists that disciplinary actions do not have to take the form of license suspensions to improve care. In the incidents above, Crimmins said three firings resulted and center policies were changed.

DFPS officials do say, however, there should have been a more elaborate investigation into the Daystar incident.

“We should have conducted more follow-up, with interviews of the children and other Daystar employees to make sure that this was an isolated incident, and to make sure that there was nothing in the prior performance of the two employees that might have indicated problems,” Crimmins said.

The fired Daystar employees’ names were added to Texas’ abuse/neglect registry, which means they shouldn’t be hired to work in direct care again.

“We believe this operation acted appropriately in response to this incident,” Crimmins said. “It is not a perfect system, but our goal is constant improvement, and to make these operations as safe as possible."

Rose, who chairs the House Human Services Committee, said he intends to make some safeguards mandatory, including forcing RTCs to pay for FBI background checks for all employees, and ordering state investigators to conduct surprise inspections within 30 days of an abuse incident.

“My office, our committee, will work to move the department in this direction immediately,” Rose said. “Unless we’re made aware of the problems, we’re left responding to them, as opposed to fixing them. Here, clearly, the department did a poor job of reporting systemic failure to the Legislature.”

Alexa Garcia-Ditta and Rachel Kraft contributed to this report.
© 2010 The Texas Tribune

Village:  AHRC Should Locate Community Residence Elsewhere
by Victoria Caruso-Davis Friday, 04 June 2010 - The Westbury Times

Non-Profit Agency Looking at Rugby Road Home

Westbury Village is asking the Nassau County Association for the Help of Retarded Citizens (AHRC) to look elsewhere when it comes to operating another community residence for children and adults with intellectual and other developmental disabilities.

Earlier this year, AHRC, a non-profit organization, entered into a contract to purchase a home on Rugby Road for the intention of operating a community residence. While sympathetic to the needs of the AHRC client population, as well as the services the agency provides, Westbury officials believe the village has “done its share to be welcoming and accommodating to persons with these and similar needs…” when compared to some neighboring communities.

According to Mayor Peter Cavallaro, the village is currently host to six community residences (three of which are operated by AHRC), including one located within three-tenths of a mile of the proposed Rugby Road home. There are also, said Cavallaro, at least 10 additional community residences, two of which are already operated by AHRC, within less than two miles of the village’s borders while no such residences currently exist in nearby Mineola or New Hyde Park.

As a result, Westbury Village, during a May 6 meeting, passed a resolution objecting to the Rugby Road home. “Our objection derives out of the sincere belief that our community has done its share and more in permitting and accommodating community residences in the past, and that other surrounding communities have not done so to the same degree as we have,” said Cavallaro, adding, “While I and the board are very sympathetic to the needs of the people whom AHRC serves, we sincerely believe that the village has been welcoming and accommodating in the past, but that to place another facility of this type in the village would be to overburden our residents, when other communities have not shared in this burden to the same degree as our residents have.”

Additionally, Cavallaro said a number of Wheatley Villa residents have expressed what he refers to as “legitimate concerns” that the establishment of a community residence on Rugby Road will change the character of the neighborhood and have an adverse affect on property values.

On May 7, the village sent letters of opposition to both the New York State (NYS) Office of Mental Retardation and Developmental Disabilities and AHRC’s Associate Executive Director Bob Goldsmith. The letter, which requested that the agency consider alternative sites and communities, reads in part, “… it appears that, while Westbury and the Wheatley Villa area have accommodated these residences in abundance in the past, other communities and areas have not done so … AHRC has the responsibility to site its facilities so as not to overburden any one community.”

In its opposition, village officials provided AHRC with a list of comparable homes available in neighboring Mineola and New Hyde Park and referenced New York State’s Padavan Law; under the Padavan Law, the state’s long-articulated policy is to mainstream persons with disabilities into residential settings. Additionally, Padavan Law procedures allow Westbury to object to the establishment on the basis of “over-saturation” of said residences in one specific community and ensure they are spread throughout communities so that the responsibility of integrating persons with disabilities is shared.

“It is incumbent on AHRC and similar agencies to make sure that this goal of the law is achieved. We do not believe that AHRC has done so and seeks to over-rely on communities, like Westbury, that have been accommodating in the past,” states the village’s letter of opposition.

Cavallaro added that, by establishing another community residence in Westbury, AHRC would cause yet another property to be removed from the village tax rolls, again causing Westbury’s residents to bear a disproportionate responsibility for these facilities compared to neighboring communities.

According to Goldsmith, the process the agency follows when searching for a community residence is the same as that of the average person seeking to purchase a home. “We work with multiple brokers throughout Nassau County. We went with a broker, saw a house that met the needs of the individuals we are trying to support and put in an offer. We then notified the village as required.” Goldsmith said.  “We have over 75 homes all over Nassau County. We are not targeting a specific community. We are in almost every neighborhood in Nassau County.”

In a May 20 letter, John Chase, an attorney with the Glen Cove-based firm of Chase, Rathkopf and Chase, LLP representing AHRC, responded to the village’s objection. In the letter, Chase states that his client disagrees with the village’s stand that a community residence on Rugby Road would change the nature and character of the village or area surrounding the home.

Additionally, the letter states that the list of comparable homes provided by Westbury as alternative sites for the community residence is not acceptable as none of the homes suggested are within the village. As a result, the village, pursuant to NYS Mental Hygiene Law, had 15 days to “suggest one or more suitable sites within its jurisdiction” that could accommodate a community residence.

Westbury complied and provided AHRC with two alternative sites within the village’s boundaries.

While locating another community residence elsewhere within the village does not address Westbury’s main contention factor of over-saturation, Cavallaro feels the two alternative sites presented to AHRC are more suitable than the home on Rugby Road. One of the homes, said the mayor, is cheaper and its location, while still within residential areas, is not as residential as Rugby Road. Additionally, Cavallaro believes both of the alternative sites are more conveniently located and closer to transportation and other services important to AHRC’s clients.

Goldsmith told The Westbury Times that the agency is in receipt of the village’s suggestions and will be evaluating them to determine if either meets the agency’s needs. “We just want to have a home for people with developmental disabilities,” he said.

Under Padavan procedures, AHRC can request that the NYS Office of Mental Retardation and Developmental Disabilities conduct a public hearing as to the suitability of placing a home at the proposed location. While the law is intended to prevent over-saturation, Cavallaro said it also limits what local municipalities can do to prevent the establishment of said community residences. The mayor acknowledges that, in the 33 years since the law by New York State Senator Frank Padavan (R, Queens), was adopted there has yet to be a successful challenge by a municipality under the over-saturation standard.

“We cannot be certain that our objection will prevail,” said Cavallaro. “The courts have been very reluctant to allow local objections to prevent the establishment of community residences.”

A public hearing may be scheduled if AHRC objects to either of the village’s alternative sites and seek to move forward with a community residence on Rugby Road. At press time, a decision had not been rendered by AHRC.

Minnesota finally apologizes to thousands of mentally disabled
By Doug Grow | Thursday, June 3, 2010 - minnpost.com

In a little-noticed action, the state Legislature passed a resolution in the waning days of the session, apologizing to thousands of Minnesotans with various mental and developmental disabilities for the treatment they received at the hands of the state dating to 1866.

"This is something that may not seem important to most,'' said Rick Cardenas, who for 13 years diligently has pushed for the apology on behalf of voiceless people. "But it is very important to the people receiving the apology.''

Cardenas is co-director of Advocating for Change Together, an organization that pushes for civil rights for people with disabilities. ACT — and Cardenas — also has been at the forefront of Remembering With Dignity, a movement best known for putting names on the graves of the thousands of previously unknown Minnesotans who died in state hospitals.

Despite the brutal treatment those with mental disabilities received, it took 13 years for this simple apology to get the support of the Legislature.

And though Gov. Tim Pawlenty ended up signing the resolution, he felt that it was necessary to sort-of apologize for the apology.

Gov. Tim Pawlenty"Today I have signed Resolution 4, House File 1680, which acknowledges the legacy of our State's past institutionalization practices, and sometimes harsh or inappropriate treatment of this vulnerable population,'' Pawlenty wrote to legislative leaders last week after signing the apology.

"However,'' Pawlenty continued in his letter, "it is important to note this resolution also negatively paints with a very broad brush the actions of State employees who, in most cases, took actions based in good faith and the scientific understanding at that time.''

The governor's struggle with signing the apology pretty much sums up why the process took so long, Cardenas said. These were the same concerns, raised in the past, by leadership of state employee unions. There were concerns that by admitting wrongdoing, the state could be held accountable in court for the way people were treated.

Stories of brutal care

But the simple fact is the treatment of people with disabilities was brutal.

Luther Granquist, who as a Legal Aid Society attorney led the fight to close the state hospitals in the early 1970s, where people with disabilities were warehoused, is retired now, but he continues to do research on the treatment people received at the hands of the state.

In the 1940s, for example, a highly respected pediatrician at Mayo Clinic, C. Anderson Aldrich, for example, advised that mothers who gave birth to babies with Down syndrome should immediately be separated from their babies and that medical staff should work with the fathers, other relatives and clergy members to tell the mothers that "that the family would be better off'' without a Mongoloid (the term at the time) child in the home. Granquist notes that even the baby boomers' pediatrician, Benjamin Spock, agreed that institutionalizing Down babies was best for all concerned.

Forced sterilizations, lobotomies, punitive shock treatments and forced labor were all part of the "scientific'' treatment of people in the past.

Still, an apology resolution, led by Rep. Karen Clark, DFL-Minneapolis, and Sen. John Marty, DFL-Roseville, was a hugely difficult battle. Even after 13 years, the apology that passed was watered down. For example, a section of the resolution devoted to the practices of physicians and medical professionals was removed by the Legislature before passage.

"They [the medical professionals] were the ones who were in control, they were the ones who established the policies, but they had to be removed [from the apology],'' said Cardenas.

Meaningful act

But at least a "we're sorry'' passed.

"It's a quiet thing but very powerful and meaningful to the people who were impacted by the treatments,'' Cardenas said.

What makes this apology unique, Cardenas said, is it began with testimony at a legislative hearing 13 years ago from a man who had been institutionalized.

"He just happened to say, 'They did these things to me and nobody ever said, "We're sorry," ' '' Cardenas recalled.

Finally, it's happened, but Cardenas admits he has "qualms'' about the meaning of it all.

"There are so many terrible things happening to the state budget,'' Cardenas said. "The cuts that are happening are hurting the poor and the people with disabilities. In some of the [legislative] hearings, I said: 'We want an apology now for past practices. But I want to remind you that we'll probably have to apologize for practices we have in place now and some point in the future."

Doug Grow writes about public affairs, state politics and other topics. He can be reached at dgrow [at] minnpost [dot] com.

Mental health advocates ask lawmakers to restore funding
The Fayetteville Observer, Wed Jun 02, 2010
By Paul Woolverton, Staff writer

RALEIGH - About 350 people, many of them mentally disabled, went to the General Assembly on Tuesday to tell the lawmakers to put back $40 million that the state cut last year from programs they depend on.

"They don't need any more cuts. They need all the funding they can get," said Benedetta Kelly, an employee with RHA Health Services of Fayetteville. Her organization helps mentally disabled people such as Derita Haddock learn job skills.

Haddock, who proudly said, "I'm a self-advocate," said she is learning to make jewelry. She and others wore T-shirts that said on the back, "I survived the budget cuts of 2009."

The state used to spend $174 million annually on programs for people with developmental disabilities, said Julia Adams, a lobbyist for The Arc of North Carolina, an organization that works on behalf of the mentally disabled. That was reduced to $134 million last year, she said, along with other cuts to other programs they depend on.

Gov. Bev Perdue and the state Senate have proposed restoring the $40 million by using $23 million in state money plus $17 million in federal economic stimulus money. The state House, according to documents released Tuesday, would allocate $18.8 million.The final figure will be a compromise among the House, Senate and governor's office.

Statewide effect

Last year's cut eliminated programs statewide, said Jennifer Mahan, chairwoman of The Coalition, a group of organizations that lobbies for the mentally ill, mentally disabled and addicted.

A press packet issued by The Coalition has stories of people with mental illness who lost therapists and other assistance with the budget cuts and whose behavior and illness subsequently worsened. Some began breaking the law. Mahan said some people with depression went off their medications and committed suicide.

None of the people in the packet were identified.

Cumberland County's Mental Health Department was subject to the cut, spokeswoman Sharon Yates said Tuesday afternoon, but the department was able to avoid cutting programs last year by dipping into its savings.

"How many years can you do that before it runs out?" said Lotta Fisher of the Mental Health Department's Consumer and Family Advisory Committee. She and fellow committee members Master McGuire and Rebecca Page went to Raleigh to lobby for money so the department doesn't have to continue to rely on its savings.

McGuire said programs such as the Special Olympics could be jeopardized if the money isn't replaced.McGuire said he spoke with Rep. Elmer Floyd of Fayetteville and Rep. William Brisson, who serves Cumberland and Bladen counties.

Brisson, who is on a House subcommittee considering how much money to spend on mental health, spoke at the rally. He thanked the clients and staff for visiting to tell their stories.

"I can tell, we don't know it all up here, and without you, and the information that we get from each of you, we cannot do what we need to do, to do the right thing for the people that we represent," Brisson said.

The state House is expected to vote on its budget plan late this week.

Staff writer Paul Woolverton can be reached at (919) 828-7641,486-3512 or woolvertonp@fayobserver.com.

Panel Approves Removing 'Retardation' From Laws
May 26, 2010 4:14 pm WJZ-13

The Health, Education, Labor and Pensions Committee on Wednesday passed Rosa's Law, a bill introduced by Sen. Barbara Mikulski, D-Md.

A U.S. Senate committee on Wednesday approved a measure to remove the words "mental retardation" and "mentally retarded" from federal labor, health and education laws to help remove what supporters describe as a hurtful label.

The bill, approved by the Senate Health, Education, Labor and Pensions Committee, would replace the terms "mental retardation" and "mentally retarded" with "intellectual disability" and "individual with an intellectual disability."

The measure is known as Rosa's Law. It is named for Rosa Marcellino, a 9-year-old Maryland girl from Edgewater who has been diagnosed with Down syndrome. Rosa worked with Maryland state legislators to pass legislation in the state last year.

Nina Marcellino, Rosa's mother, said she was thrilled to see the measure advance in Washington. She said the legislation will move the nation closer to shedding a stigmatizing label attached to people with intellectual disabilities.

"This has always been about so much more than just changing words or political correctness," she said in a statement. "It's about marking a new era where the dignity of people with intellectual disabilities is respected and their value appreciated."

The measure was introduced by Sen. Barbara Mikulski, D-Md., who met Rosa's mother at a meeting on special education. Mikulski said that if Rosa's law passed in Maryland, she would introduce it in the Senate.

The bill does not affect services, rights or educational opportunities for people with intellectual disabilities. It makes language used in federal law consistent with language used by the Centers for Disease Control and Prevention, the World Health Organization, and the White House through the President's Committee for People with Intellectual Disabilities.

A preliminary analysis from the Congressional Budget Office found no cost associated with the change.

Sen. Tom Harkin, D-Iowa, and Sen. Michael Enzi, R-Wyoming, are co-sponsoring the legislation. The measure will now be considered by the full Senate.

H. Gilbert "Gil" Johnson, 83
Past President of The Arc Passes Away

May 27, 2010 - www.oregonlive.com

H. Gilbert Johnson of Portland passed away Monday, May 17, 2010, following a long illness. He was 83. Born March 16, 1927, in Milton, Mass., Gil was the oldest of six children born to Harry and Ebba Johnson. After graduating high school at age 16, he attended Northeastern University in Boston. He interrupted college to enlist in the U.S. Navy when he turned 18, just as World War II was winding down. The war ended when he was still in basic training.

He was part of the charter crew of the aircraft carrier USS Franklin D. Roosevelt, which patrolled the Caribbean and Atlantic after the war. Gil returned to college, graduating from Boston University in 1950. When a cousin got married and moved to the Seattle area, Gil and his best friend drove the couple's car across the country. While the friend took the first train home, Gil took one look at the Pacific Northwest's salmon and was hooked. He stayed. He married Emily Aaberg in 1951, and they had four children, Richard, Tom, Susan and Nancy.

Gil spent several years with Union Oil, transferring often between the Portland and Seattle areas. Faced with a promotion that would send him to Southern California, he followed the advice of a high school friend and joined Merrill Lynch where he spent nearly 40 years as a broker in Portland. While many brokers take their clients golfing, Gil never touched a club in his life. His passion was hunting and fishing, which he shared with family, friends, clients and sometimes total strangers.

Inspired by second-born son Tom, who had a unique combination of autism and mental impairment, Gil was involved in very early efforts to help all mentally disabled children. He literally helped build the area's first school for mentally disabled children-what is today the Edwards Center in Aloha. He spent countless hours involved in local, state and national advocacy organizations, and in 1978 was elected president of the National Association of Retarded Children, the charity now known as The Arc of the United States.

After retiring from Merrill Lynch, Gil often consulted for his old brokerage partners by entertaining clients on a river, in a duck blind or hiking across Eastern Oregon farmland in search of upland birds. There may be only a handful of rivers in Oregon and Washington he never fished. In later years, Gil expanded his horizons, taking fishing trips to Canada, Alaska, Belize, The Bahamas and Russia. A faded wooden duck decoy that was a gift from his father put Gil on a decades-long quest for antique decoys that decorate his Portland home and the family cabin on the Trask River. And many have been blessed with his handcrafted gifts - trivets made of corks from wine bottles and arranged feathers from the many wild turkeys that fell victim to his shotgun.

Gil is survived by five siblings, three children and eight grandchildren. He was preceded in death by his wife Emily in 1981, and son Tom in 2002. There will be a viewing from 11 a.m. to 5 p.m. Saturday, May 22, 2010, and again at 9 a.m. Monday, May 24, in Skyline Memorial Gardens, 4101 N.W. Skyline Blvd., Portland. A celebration of life will follow the viewing at 11 a.m. Monday, May 24. The service will consist of stories from those touched by Gil's life. The family hopes you'll be ready to share a story. In lieu of flowers, remembrances may be made to The Arc of Oregon.

Disability Action Coalition Hosts Annual Disability Capitol Action Day,
Recognizing 20th Year Anniversary of ADA

Disability rights advocates (1500 – 2000) highlight proposed budget cuts that would drastically set back decades of civil rights gains

WHAT:    Disability Capitol Action Day

WHO:      Disability rights activists; Disability Rights Education & Defense Fund Senior Policy Analyst, Marylou Breslin

WHEN:    May 26, 2010 -- March towards Capitol begins at 10:30 a.m., rally on west lawn until 3 p.m.

WHERE:  March at 10:30 a.m. begins at 15th and L and assembles on the west lawn of the Capitol.

SACRAMENTO -- In one of the largest cross-disability events in the nation, the California Foundation for Independent Living Centers (CFILC) will host the 7th annual Disability Capitol Action Day this Wednesday. CFILC will stand in solidarity with disability advocates to recognize the 20th anniversary of the Americans with Disabilities Act, the disability community’s civil rights act, on the West Steps.

The event comes on the heels of the Governor’s May budget revision, which threatens to slash funding and entirely eliminate programs that provide services and supports for children and adults with disabilities.

“The severe threats the State Budget presents to our ability to work, go to school, and live independently make it all the more important that people with disabilities raise our voices to let our elected officials know that people with disabilities are a vital part of California’s communities,” said Jessie Sandoval, Consumer Advocate.

“It’s particularly fitting that we gather at the Capitol to celebrate the 20th anniversary of the landmark Americans with Disabilities Act,” said Teresa Favuzzi, Executive Director of the CFILC. “On this day, we remember the disability community’s leadership in achieving passage of this landmark civil rights bill, and we commit ourselves to continue the fight for full inclusion in schools, workplaces, and community activities.”

Joining today’s Disability Capitol Action day are dozens of youth leaders from the disability community who represent the next generation in disability rights activists.  Earlier month, these youth leaders achieved Assembly passage of a landmark resolution that would recognize the significant advancements in civil rights achieved by the disability community and encourage schools and colleges to incorporate disability history into their classroom activities. ACR 162 authored Asm. Jim Beall D-San Jose, would designate the second week of October as Disability History Week.

Wednesday’s event will begin with a march towards the West Steps of the Capitol, followed by prominent speakers from the disability rights community and those instrumental in fighting for rights, programs, and services that make it possible for people with disabilities to live independently.  The Arc of California is among the participating organizations.

Bipartisan Senate bill aims to take 'retarded' out of federal lexicon
By Julian Pecquet - The Hill - 05/23/10 05:41 PM ET 

Senators are preparing to eliminate all references in federal law to the terms “mental retardation” and “mentally retarded individual.”

Rosa’s Law, which will be marked up on Wednesday, would replace those terms with “intellectual disability” and “individual with an intellectual disability.”

Sen. Barbara Mikulski (D-Md.) introduced the bill last November after promising a constituent she would act if the Maryland legislature passed a similar law. The Maryland law passed unanimously, and Gov. Martin O’Malley (D) signed it into law last year.

The bill is named after Rosa Marcellino, who has an intellectual disability and whose family was instrumental in passing the Maryland law.

It will be marked up in the Senate Health, Education and Pensions (HELP) Committee this week and is considered non-controversial legislation.

Attention to the word "retard's" hurtful consequences has taken off in recent years, thanks in part to the outspoken former Alaska Gov. Sarah Palin, whose son Trig has Down syndrome. Palin called for White House Chief of Staff Rahm Emanuel to be fired earlier this year after he called liberal healthcare activists “f-----g retarded,” but she has been less forceful when conservatives such as talk radio show Rush Limbaugh have used the term.

Rosa’s Law would benefit all children “who are labeled, stigmatized, and bear a burden the rest of their lives because of the language we use in the law books,” Mikulski said in her floor statement when she introduced the bill.

“It is a much needed change in the law that is fully deserving of our support,” said co-sponsor Mike Enzi (R-Wyo.), who followed Mikulski on the floor.

Rosa’s Law has 42 bipartisan co-sponsors in the Senate, including health committee Chairman Tom Harkin (D-Iowa). The House version, introduced by Rep. Michael McMahon (D-N.Y.), has 30 co-sponsors.

"This bill, as I can assure all who might be concerned, will not expand nor diminish services, rights or educational opportunities,” Mikulski said.

And the American Psychological Association, which pays special attention to how mental conditions are named and described, has no issues with the bill either.

“APA has no concerns with this and most disability-related language has changed from mental retardation to the more PC [politically correct]  ‘intellectual disability’,” Anju Khubchandani, director of the APA’s Office on Disability Issues, said via e-mail.

Khubchandani pointed out the APA’s Division on Mental Retardation, which connects experts in that field, has been renamed to Division on Intellectual and Developmental Disabilities.

“However,” he wrote, “APA does not have an official endorsement one way or the other.”

Asked about the bill’s prospects on the Senate floor, a Mikulski spokeswoman said: “We’re currently focused on passing the bill out of committee. We’ll consult leadership after next Wednesday and hope that the strong general, and bipartisan, support will support our case to move to final passage.”

Source:
http://thehill.com/homenews/senate/99391-senate-bill-aims-to-take-retarded-out-of-federal-lexicon

By CLARE ANSBERRY
Wall Street Journal - May 20, 2010

FLORENCE, S.C—Tandem forces of shrinking state budgets and rising health-care costs have collided and struck a small brick ranch house in this rural town, home to Barbara Hickey.

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse's assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

After several days of reduced care, the local office of the South Carolina Legal Services appealed the cuts on behalf of Ms. Hickey. Her hours have been restored pending the appeal.

Home health care—funded largely by Medicaid—generally costs less money than institutionalizing developmentally disabled people like Ms. Hickey. But the political reality is that it's easier to cut back home services than to close a 24-hour facility, which can leave people with nowhere to go. Thus, some of the biggest cuts around the country are happening in the basic services that help the disabled cope at home.

South Carolina says it has little choice but to cut funding for Medicaid. It faced a $563 million deficit for the current fiscal year, and like other states must have a balanced budget. Medicaid, the joint federal-state health-insurance program for the poor and disabled, already consumes about 20% of its $5 billion budget and is one of its fastest growing costs.

The health-care program is on course to consume 40% of the budget of South Carolina in five years, and leaves little for anything else, says Gov. Mark Sanford. "It could force legislators to either cut further into bone in the areas of education, law enforcement and economic development, or raise taxes. Neither option is palatable."

The state already is making painful cuts elsewhere. The state's Department of Juvenile Justice has closed five group homes and cut 25 after-school programs. There are 1,000 fewer public-education teachers this school year than last.

Across the country, budget-strapped states are focusing on Medicaid. Created in 1965, it is now a $379 billion program, including state and federal funds. State spending grew an average 7.9% in fiscal 2009 as the economic crisis hit and more people signed up for Medicaid.

It was the highest growth rate since the last downturn six years ago. Spending is expected to keep growing at that pace for the next decade because of rising costs and growing enrollment.

But states don't have much flexibility when it comes to what they can and can't cut inside Medicaid. Although it is a state-managed system, the federal government pays a percentage of each state's total costs and makes many of the Medicaid rules. Under federal Medicaid law, states must offer inpatient and outpatient hospital care, X-rays and lab services. They also have to cover nursing-home services and meet certain standards, such as staffing ratios.

There are further constraints this year. States can't reduce Medicaid eligibility this year because of a condition attached to federal stimulus money, and under health-care reform, they can't eliminate existing programs.

States also run up against other laws when they make deep cuts. Lawsuits have been filed in South Carolina, Florida, Connecticut, Virginia, Mississippi and New York, claiming Medicaid cuts make it impossible for those with disabilities to live at home and that it violates the Americans with Disabilities Act.

Logically, states would cut the most expensive, least efficient services and keep the most cost-effective. But because of mandates and the need to save money quickly, that isn't as easy as it sounds.

For example, home care—because relatives often provide some of the care—is generally cheaper than housing people with developmental disabilities in institutional facilities. In 1993, the average Medicaid cost for each person with disabilities was $48,500. At the end of 2008, the latest figures available, it cost an average $55,000. Adjusted for inflation, that actually represents a 23% decrease, largely as a result of more services being shifted away from costly institutions to the home, says Charlie Lakin, director of a University of Minnesota program that tracks services for the developmentally disabled.

But many in-home services, though critical to those receiving them, are optional. Furthermore, there aren't many minimum standards set for in-home services, so it's easier to cut them without violating funding requirements. There are fewer immediate consequences for the state when it cuts those services because families won't generally abandoned disabled relatives and leave states on the hook for housing.

Cutting home care could ultimately prove penny-wise and pound-foolish, however. It could push more people into institutions or large group homes because that is where services are guaranteed, even though institutional care is more expensive.

Although only about 10% of the Medicaid budget goes to treat the 618,000 developmentally disabled Americans— the same percentage as a decade ago—average spending for each person is more than 10 times higher than for all Medicaid recipients. "Since their services cost the most per person they draw attention," says Mr. Lakin.

New Mexico has cut cash assistance payments for low-income disabled residents by one-third. Vermont and California have made cuts to home-based programs for the disabled.

Some of the biggest cuts are coming in South Carolina. Tax increases are particularly hard to pass here, so lawmakers rely largely on spending cuts to balance the budget.

Since 2008, the Department of Disabilities and Special Needs has lost 28% of its base funding, eliminated physical, speech and occupational therapies and capped the amount of diapers and nutritional supplements provided to people living at home. Seven group homes were closed.

The department's fiscal problems have been exacerbated by past spending decisions. A special state audit released in December 2008 showed that the department hadn't provided many new services for which it had received funding and, as a result, it couldn't recoup millions in federal matching Medicaid dollars. For example, the state spent less than $700,000 of $10 million allocated to serve autistic children, which resulted in the loss of $13.6 million in federal matching money. The state said it couldn't ramp up the program fast enough because it couldn't find qualified service providers. After the audit, the executive director of the department and four of the department's seven commissioners resigned. The department has since implemented most of the recommendations made by the Legislative Audit Council.

Recent state cuts have targeted developmentally disabled people living at home. In December, families were told that some of their in-home support was being cut by as much as half.

Brian Phillips, a 37-year-old with cerebral palsy, was told that he was losing half of his personal-care hours. He can work a TV with a remote control but can't dress or feed himself, or get in and out of his bed or wheelchair.

He lives alone with his father, James, 70. The elder Mr. Phillips, who has had open heart surgery and whose heart functions at only 26% of its capacity, cannot lift Brian on his own. He appealed the cuts and the hours were restored pending his appeal.

"These are cuts no one wants to make. They are very difficult for agencies to implement and they are very upsetting and very, very difficult for our families," says Lois Park Mole, spokesperson for the state Department of Disabilities and Special Needs.

People will generally do what they must to keep their disabled family member at home regardless of the cuts. At some point, however, even the most dedicated may not be able to continue, especially as their own health deteriorates.

Jimmy "Chip" Eubanks of Clinton, S.C., has severe cerebral palsy, but doesn't have mental retardation. "My mind works fine," he says. The 37-year-old has a full life at home. He can drive his motorized wheelchair with his mouth and use a computer with a stick-like device attached to his head. During the football season, he writes notes to the Clinton High Red Devils team and prepares plays for them. He hasn't missed a game in 18 years.

"My biggest fear is having to go to an institution," he says.

His parents were able to take care of Chip on their own until about three years ago when Linda Eubanks, now 68, had a brain aneurism. Already diabetic, the aneurism further compromised her health. She is nearly blind and in a wheelchair.

She can't see well enough to drive, use the stove or feed her son. Her husband has a bad back and can't lift Chip, who is 6 feet tall and weighs 185 pounds.

The couple relies on Amber Plaia, a certified nursing assistant. Ms. Plaia gets Chip out of bed, bathes, dresses and feeds him. She takes him to doctors' appointments.

In the evening, Chip's uncle, who lives nearby, can put him into bed most nights. Otherwise, Chip sleeps in his wheelchair.

Chip's personal-care help—essentially Ms. Plaia—has been cut in half to four hours a day. He appealed and his hours were restored pending the appeal. He, and three others, have filed suit against the state, saying the cut violates the Americans with Disabilities Act.

Ms. Park Mole said people like Chip could get "respite care" to help make up for the loss of personal-care help. Medicaid also helps pay for respite care, which costs less because the workers provide a lower level of care.

In some parts of the state, personal-care workers are paid $12 an hour and respite-care workers about $8 an hour.

Families said that isn't always a feasible option. Respite-care workers aren't expected to bathe people or clean breathing tubes, and families say it can be hard to find qualified ones.

In Aiken County, Board of Disabilities Executive Director Ralph Courtney says waiting lists for services are growing. There are more than 5,000 on waiting lists for various services, from residential programs to in-home programs.

"We want to give families hope to keep their family unit together, but in reality there is very little we can put in place to assist them," says Mr. Courtney.

In-home support is cheaper, he says, than the alternative: group homes and larger residential programs that need to be maintained and staffed 24 hours a day. "But you can't put people out on the street," he says. "You can cut in-home support."

Even though Ms. Hickey lives alone and needs help with nearly every aspect of daily living, it cost less to have her live in a house with 50 hours of personal care help than in a nursing home. Institutional care in South Carolina costs about $100,000 per person a year, compared to $39,000 for home and community services, according to the University of Minnesota research.

There are other considerations. Though disabled since birth, and barely able to read or write, Ms. Hickey is aware of her surroundings and her situation.

She enjoys being able to go outside the back door, which is equipped with an automatic opener, onto a porch. She can ride her motorized wheelchair down the street to Burger King. She doesn't want to live in a nursing home, institution or group home. "I'm not losing my mind. I just don't have a body to do things other people can," she says.

The cuts for the developmentally disabled are almost certain to bite deeper in the future. Part of the federal stimulus money this year was designed to prop up Medicaid. The federal infusion disappears for the fiscal year starting in July 2011.

South Carolina faces an even bigger budget deficit of $1.1 billion when the one-time money runs out.

Write to Clare Ansberry at clare.ansberry@wsj.com

Ann Cameron Caldwell Joins The Arc to Lead Philanthropic & Research Initiatives

Washington, D.C. – Ann Cameron Caldwell, Ph.D., has joined The Arc of the United States as the new Chief Research and Innovations Officer.  Dr. Caldwell will be responsible for advancing The Arc’s mission at national and local levels through leading innovative growth and outcome opportunities in partnership with public agencies and philanthropic organizations, and implementing effective organizational metrics and knowledge management practices.

“Ann Cameron is widely respected in the disabilities field; she brings a wealth of experience in forging partnerships with philanthropic organizations, public agencies and others on behalf of people with disabilities.  Her background in these areas and in academia will serve to strengthen and support The Arc’s continuing growth and momentum,” said Peter V. Berns, CEO of The Arc.

Prior to joining The Arc, Dr. Caldwell was Assistant Vice President for Grant Development at Easter Seals, Inc., a post she held since early 2007.  In this role, she led grant development activities for the national headquarters in federal and foundation arenas, and contributed to the organization’s strategic development and knowledge management efforts.

Previously, Dr. Caldwell was an independent consultant to nonprofit organizations in strategic development and program evaluation.  She obtained her doctorate in Disability Studies from the University of Illinois at Chicago in 2005, where she also was project coordinator of the Rehabilitation and Research Training and Technical Assistance Center on Aging with Developmental Disabilities, funded by the National Institute of Disability Rehabilitation Research.  Dr. Caldwell received her Master’s degree from The University of Chicago in 2000.  She is also the parent of a teenager with Down syndrome.

The Arc is the world’s largest community-based organization of and for people with intellectual and developmental disabilities.  It provides an array of services and support for families and individuals and has more than 140,000 members with approximately 730 affiliated state and local chapters across the nation.  The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities.

About The Arc of the United States
The Arc of the United States (The Arc) promotes and protects the human rights of people with intellectual and related developmental disabilities, from any of hundreds of specific syndromes and neurological conditions throughout their lifetimes. Together with our network of 730 state and local chapters, as well as our individual members, we support full inclusion and participation in their communities and influence public policy. For more information, please visit www.thearc.org

How Much Extra Time?
Inside Higher Ed - May 18, 2010

Another fight over extra time on exams has been temporarily resolved, leaving unanswered the questions of to what extent colleges should grant accommodations to students with learning disabilities -- and who decides what adjustments are appropriate.

This time the battleground was Princeton University, where first-year student Diane E. Metcalf-Leggette sued the university last fall, charging that it stood in violation of the Americans With Disabilities Act by declining to give her twice as much time as most other students to complete exams -- Metcalf-Leggette has been diagnosed with dyslexia and attention deficit hyperactivity disorder.

Metcalf-Leggette later registered a complaint with the U.S. Department of Education in February alleging that “the university retaliated by seeking additional information about [her] disability, questioning whether the student was qualified to attend the university and pursuing certain disciplinary action against the student,” according to department records.

The Education Department had already been investigating a similar complaint by another student, filed last November. That student says Princeton “failed to provide [a] student with a disability needed academic adjustments, such as extended time on tests, and failed to evaluate the student’s requests for academic adjustments,” according to the department.

Both complaints remain under investigation. The case of Metcalf-Leggette, however, has taken on a higher profile due to the lawsuit and the public filings that have opened the details of the case to scrutiny.

According to court documents filed by Princeton’s lawyers, Metcalf-Leggette requested special accommodations for her disability last August, two months after students were supposed to have notified the university of any special needs. While Princeton’s Office of Disability Services agreed to make certain exceptions for Metcalf-Leggette — such as allowing her to take exams in a room with limited distractions, allowing her to use a laptop, letting her take short breaks during long exams, and excusing her from taking more than one exam on a given day — they would not allow her to take extra time on exams, per the recommendation of a neuropsychologist hired by the university.

Metcalf-Leggette, who had lobbied for double the standard test-taking time allocated to non-disabled students (plus 10-minute breaks every hour), hired her own neuropsychologist to conduct an independent evaluation. Based on the second opinion, Princeton agreed to let Metcalf-Leggette take 50 percent more time on exams than most of her peers. But Metcalf Leggette insisted that anything less than twice the standard allocation would be inadequate, and declined to withdraw the lawsuit.

That is the version of events outlined in Princeton’s last court filing, a 35-page document largely devoted to denying charges of institutional bias against students with learning disabilities and other accusations levied by Metcalf-Leggette’s attorneys.

Metcalf-Leggette’s version of events could not be immediately obtained by Inside Higher Ed, and Metcalf-Leggette declined to be interviewed.

The legal saga came to a somewhat inconclusive end last Thursday, with Metcalf-Leggette dropping the suit in exchange for Princeton temporarily giving her 100 percent extra time on exams while the university assembles a task force to review its accommodation practices. Once that task force completes its review, the university reserves the right to reduce Metcalf-Leggette’s privilege back to 50 percent.

Sheldon E. Steinbach, former general counsel to American Council on Education, says he requires no task force affirmation to convince him of Princeton’s commitment to providing learning-disabled students with an appropriate level of accommodation. “The colleges and universities of this country … have bent over backwards to accommodate students that they have admitted to ensure that they have a successful academic experience,” Steinbach said.
In court documents, Princeton said it currently grants extra time on tests to 68 students. A spokeswoman told the student newspaper that the university allows some students 100 percent extra time for exams, though she said she could not provide further details for privacy reasons.

Acknowledging he has no inside knowledge of the case, Steinbach said he was inclined to doubt whether the medical opinion of the neuropsychologist hired by Metcalf-Leggette could be trusted as anything but an attempt to buy an undue advantage on exams.

“I could get you doctor by 4 this afternoon that would verify that you have an emotional disability that occurred over the weekend that will prevent you from handing in this article,” he said Monday in a phone interview.

“I would put greater faith on the university’s doctor, who has to make determinations of this kind on an ongoing, nonpartisan basis,” Steinbach said, “rather than someone who is hired on behalf of an individual who may just be in the position of advocating for her.”

The crux of the argument for being cautious on extra time is that granting it could be unfair to other students and erode the meaning of good grades. While federal law does apply, the government tends to defer to universities’ right to maintain their academic standards so long as “they’re not making up academic standards on the spot,” says Ann Franke, president of the consulting firm Wise Results LLC.

But Scott Lissner, chair of the committee on public policy and government relations at the Association of Higher Education and Disabilities, says that determining a point at which extra time begins to threaten academic integrity in any given case can be impossible to pin down with any precision. “I’m not sure how you make the distinction that 50 percent time does not undercut academic integrity and 100 percent would undercut academic integrity,” Lissner said. “That’s a pretty fine line, and it’s not distinct in science.”

Unlike certain standardized tests that have undergone a norming process with respect to standard completion time, most professors write their tests “by intuition and the seat of our pants,” said Lissner, who teaches at Ohio State University. Figuring how much longer a student should rightfully get to finish a test, given his or her particular inhibitions, he said, is a similarly inexact exercise.

However, there are ways it might be made more exact, says Howard Wainer, a research scientist for the National Board of Medical Examiners and a 1968 Princeton graduate.

Shortly after the news broke last fall of Metcalf-Leggette’s lawsuit against the university, Wainer wrote to the Princeton Alumni Weekly proposing a scientific approach to accommodating special-needs students more fairly. He suggested gathering data via a method of “low-dose extrapolation” often used in drug research.

“An exam should be given to students without disabilities who are divided randomly into groups that receive, say, one hour, two hours, three hours, etc.,” he wrote. “Then their average scores are plotted as a function of the amount of time they received,” Wainer continued. “This allows us to connect time with score, and thence to adjust the scores to what they would have been with unlimited time. Next, students with disabilities are provided unlimited time (if they request it). When we then use the adjusted scores, the field is level.”

— Steve Kolowich