The Arc of United States News

A Future Without Down Syndrome?
by Dana Goldstein, The Daily Beast – Blogs & Stories

With improved testing just a few years away, the number of secular, educated families affected by Down syndrome could plummet. Dana Goldstein talks to parents who hope that doesn’t happen.

“There was a time when I thought about Down syndrome nearly all the time,” blogger Maya Kukes wrote five years ago. “There wasn’t a day that I didn’t wake up, roll over and think, ‘My baby has Down syndrome.’ And yes, I was sad about it. I’ll go ahead and say that I was full-on depressed about it.”

Today, Kukes is more likely to brag about her son’s triumphs than fret about his limitations. Leo’s speech therapist reports that he’s developing “a sophisticated sense of humor.” He can sight-read half a dozen words. He’s protective of his 2-year old sister, Ellie, and loves to run. But when I call the 36-year-old editor at work to discuss the latest research on the genetic disorder that affects her son, she asks me to hold on for a second while she shuts her office door. A few minutes later, Kukes is choking back tears after I ask her if she ever gets the sense that other parents in her cohort—upper middle class, urban, highly educated—are wondering how, with all the genetic technology now available during pregnancy, she ended up with a child with Down syndrome?

“I would have wondered that, before, if I met someone like me,” she says. “I was never close to anyone who had any sort of handicap.” Kukes did get genetic screening, a blood test and ultrasound that showed her fetus was at a slightly heightened risk of Down syndrome. But doctors told her the more conclusive amniocentesis test carried a risk of miscarriage higher than the risk that her baby would be born disabled, so she opted out.

As emerging technology is expected within several years to allow pregnant women, for the first time, to test safely and conclusively for the disorder as early as the first trimester, a sense of responsibility—of having to provide a model of special-needs parenting—is growing among some college-educated parents dealing with Down syndrome.

Considering that several studies suggest as many as 90 percent of couples who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancy, it’s possible—even probable—that this particular moment represents a demographic crossroads for Down syndrome, and that the number of secular, college-educated families affected by the condition is about to drop off steeply. Many parents raising children with the condition fervently hope that does not happen.

“I worry there won’t be a lot of kids with Down syndrome, and Leo will not have a large peer group,” Kukes says.

The new genetic technology—a blood test that will isolate fetal from maternal DNA, checking for the telltale 47th chromosome that marks the condition—could reverse an upward trend in the incidence of Down syndrome across the population. About 400,000 Americans now live with Down syndrome. According to a study published last month in the journal Pediatrics, between 1979 and 2003, the number of babies born with the condition increased from nine to about 12 per 10,000 births. The biggest reason for the shift was women waiting longer to have children; increased maternal age is the biggest known risk factor for the disorder.

In part because older parents tend to be well-educated and affluent, a vocal community of Down syndrome advocates arose. The result was increased visibility of people with Down syndrome in popular culture—think of movies like The Other Sister and TV shows like Life Goes On—as well as more funding for Down syndrome research and educational mainstreaming of disabled children. Medical advances also helped people with Down syndrome live longer, more productive lives, in large part through treating the heart problems that plague so many babies born with the condition.

Now advocates worry that more aggressive genetic testing could halt that progress, in part by relegating Down syndrome to groups already more likely to have children with the disorder, either because they are opposed to abortion or because they cannot afford the full range of prenatal care: Hispanics, the very religious, and the poor. Harold Pollack, a public-health expert at the University of Chicago, stresses that this hasn’t happened—at least not yet—in the United States. But a 2006 study in France found that Down syndrome was becoming more prevalent among certain disadvantaged socioeconomic groups that were less likely, for cultural reasons, to access prenatal testing.

“There’s a strong correlation between disability and poverty to begin with,” says Andrew Imparato, president of the American Association of People with Disabilities. “The concern we have is that once the children are born, will they have the supports they need for education and health and a positive life outcome? In low-income communities, the supports are not the same.”

Rachel Adams, a professor of English and American studies at Columbia University, is one of the special-needs parents whose ranks may dwindle in coming decades. She was studying the history of disability in popular culture for years before she gave birth to her son Henry, now 2. Still, learning her newborn had Down syndrome was “the biggest shock of my life,” she says. “A tremendous shock.”

Adams describes herself as a pro-choice feminist, a woman who wouldn’t want to deny any other woman the choice of whether to carry a pregnancy to term. But she’s also committed to giving expectant parents a more hopeful view of what it’s like to be a mother of a child with Down syndrome. This spring, she and a friend will be giving talks to genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

Adams sees a contradiction in our society’s increasingly friendly bearing toward disabled people and its obsession with developing ever more revealing genetic tests. “Now that I have Henry, I go from such optimism to such extreme worry,” she says. “There are ethicists who ask, ‘At what cost to humanity is the elimination of whole categories of people?’ You’re living with these contradictions—wanting women to have complete reproductive freedom but wishing the choices they had were conveyed to them in a different way.”

Kukes says she doesn’t want other parents to pity her.

“I feel like a lot of times when I’m out with Leo, it’s my responsibility not to put a happy face on Down syndrome, but to show people that he’s not the end of the world,” she says. “When he was born, I did think it was the end of the world. But now I think he’s the best thing that ever happened to me. And I know it sounds cliché.”

Dana Goldstein is an associate editor and writer at The Daily Beast. Her work on politics, women’s issues, and education has appeared in The American Prospect, Slate, BusinessWeek, The New Republic, and The Nation.

By DINA MENDROS
Staff Writer

BIDDEFORD — Lack of money in state coffers is forcing nearly all state agencies to cut back on services. In the Maine Department of Health and Human Services, the cuts are affecting services provided to those with cognitive and other developmental disabilities.

Take 32-year-old Michael Doggett: A series of operations shortly after his birth left him with developmental disabilities and a diagnosis of mental retardation.

“He could never live by himself,” said his mother, Sue Ellen Doggett.

She and her husband Ed care for their son in their Waterboro home. However, both parents are getting older. Doggett said she fears what will happen to Michael once she and her husband are no longer able to care for him.

“Parents are afraid to die because there’s no place for their children to go,” said Cullen Ryan, executive director of the Maine Coalition for Housing and Quality Services.

In the past, someone in Michael’s position would be eligible for services through one of Maine’s waiver programs, which pays for a number of support solutions for people diagnosed with mental retardation, autism or another developmental disability. These programs have traditionally allowed disabled people to live in a community setting such as a group home.

In October 2008, the comprehensive waiver program that provided a host of services, including around the clock support, closed. The support waiver day program also closed in October 2009.

Now the only time a person can move into a waiver program is if another moves off, usually due to death, said Charlene Kinnelly, a lobbyist with Maine Association for Community Service Providers.

As a result, there is a waiting list for new people who need these services but cannot access help because of lack of funding, said Brenda Mitchell, director of operations for Community Partners in Biddeford.

According to the Office of Developmental Services in the Department of Health and Human Services, 230 people are on the waiting list for the comprehensive waiver. Half of those people are classified as adult protective status, meaning that they are in immediate need of services to protect their health and welfare.

And that list is growing every day.

The same is true with the 50+ person waiting list for the support waiver.

Most of the new clients who move onto the support waiver are those just graduating from high school. While in school, young people with developmental disabilities can receive services through their school.

For instance, Michael Ryan’s 13-year-old son, Camden, who has been diagnosed with a number of developmental disabilities, including mental retardation, receives services through Portland’s public school system.

Camden Ryan attends seventh grade and takes special education classes. He also receives 20 hours of in-home support designed to help him learn to navigate society and get ready for adulthood.

Once he graduates from high school, however, those support services will end.

A person who leaves the school system has nothing, said Kinnelly, and the whole family can suffer.

Because the support waiver is no longer accepting new people, said Cullen Ryan, it’s likely that either he or his wife, who both currently work in professional positions, will have to quit their job to care for their son.

In addition, their son – who could potentially hold down a job of his own and contribute to society – won’t have that opportunity if support services are not restored.

Stacie Smart ,who is 37 and lives in Berwick, receives services through the support waiver and lives on her own and volunteers. She said without this service she would probably just stay home with nothing to do.

According to the Maine Department of Education, the number of students who are diagnosed with either mental retardation and/or autism and who will potentially need some level of support services after they graduate is 35 this year. By 2019, the number could increase to 113.

The waiver program was started in 1983, said Kinnelly. It began after Maine started removing people from Pineland, a state institution for people with developmental disabilities, in the 1950s, and accelerated that process in the 1970s.

Clients on waivers give up their right to state institutional care and opt instead for community services. Community placement in group homes was deemed more humane, and less costly to the state, she said.

For years, Maine was considered a leader in providing services to people with intellectual disabilities, said Kinnelly, but “the safety net is starting to have some significant holes.”

Since new people can’t receive services through the waiver, those in the most urgent need are being moved into crisis shelters.

The majority of waiver services are paid for through MaineCare, for which each dollar of state funding is match by two dollars of federal funds.

But placement in crisis shelters is paid for entirely with state money.

In addition, organizations that provide housing and services for people with intellectual disabilities are in trouble, which in turn is hurting the clients for whom they acre.

For the first time in her 28 years with Community Partners, she has had to ask clients to pick up and move from their homes in order to consolidate, said Mitchell.

She added that the per person cost is going up, which puts the organization in financial jeopardy.

“We certainly understand these are very difficult times,” said Kinnelly.

However, she said, “These are people who cannot support themselves.”

“I don’t think we’re being as creative as we might be,” said Kinnelly.

She advocates for cutting some state requirements for training, licensing and documentation as one way to cut costs.

“It’s almost like a time bomb that hasn’t gone off,” said Kinnelly.

Housing Advocates Settle Suit for Disabled Renters

GOP donor Alex Spanos' sons to pay millions in settling federal lawsuit for accessible housing

By GARANCE BURKE Associated Press Writer
FRESNO, Calif. January 13, 2010 (AP)

Thousands of renters with disabilities are poised to get extreme home makeovers thanks to a major settlement ending a federal lawsuit against a development company run by the sons of GOP donor and San Diego Chargers owner Alex Spanos.

The settlement announced Wednesday by the National Fair Housing Alliance will require the A.G. Spanos Companies to retrofit 82 apartment buildings in 14 states with wheelchair-friendly doorways, graded walkways and other improvements to ease access for the disabled.

The companies will pay about $7.4 million to rehab up to 12,300 rental apartments, and will set up a $4.2 million fund for disabled renters and homeowners across the country who want to redo their own homes, bringing the total cost to about $14 million, the housing advocacy group said.

"The A.G. Spanos Companies are proud to reach this agreement," Spanos' son Michael Spanos said in a statement. "(We) share the same goal: ensuring that people with disabilities enjoy equal access to housing."

The federal Fair Housing Act requires construction companies to build dwellings that are accessible to people with disabilities, and the lawsuit, filed in 2007 by five advocacy groups, accused the Spanos firms of failing to live up to the law.

Housing activists came across the problem after sending out a team of undercover agents to Spanos complexes in Georgia, Florida and California to masquerade as potential homebuyers. The team found dozens of doorways too narrow to accomodate wheelchairs and other design flaws that blocked access to the disabled.

"Sometimes you would find the kitchens were too narrow, in others you would find it was the bathroom, or sometimes accessibility issues in the parking lot," said Shanna Smith, president of the Washington, D.C.-based group. "We were pretty stunned that this was still such an issue in the United States.

During the negotiations, Smith said Michael Spanos met personally with civil rights groups and housing advocates. His father, Alex, one of the largest contributors to the 2004 campaign of George W. Bush, has retired from that aspect of the family business, attorney Michael Gurev said.

The total number of units that need rehabbing will likely be lower than 12,300, as will the retrofit cost, in part because the Stockton-based Spanos companies will try to recuperate some of the money from architects and designers, Gurev said.

The settlement was approved late last year by a U.S. District Court judge in Oakland, and the first payments to cover attorneys' fees and damages arrived a few weeks ago.

It is likely one of the largest of its kind, Smith said.

In comparison, the largest housing accessibility settlement brought by the Department of Justice applied to 5,400 units, said spokesman Alejandro Miyar.

Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

The Arc Mourns the Loss of Tim Quinn
January 12, 2010

It is with profound sadness that we learned of the passing of Timothy James Quinn, a much beloved member of The Arc family and Executive Director of The Arc Northern Chesapeake Region in Maryland. Tim lost his courageous battle against cancer on Sunday evening.

Tim was widely respected and fiercely admired for what everyone who knew him termed his visionary leadership and solid stewardship. Since 1990, he was at the helm of The Arc Northern Chesapeake, an organization he transformed from facility based services to support services. Among the many bold decisions he made was to be one of the first chapter executives to close their sheltered workshops by moving employees into integrated settings. Tim traveled throughout the country providing training on how this was accomplished and giving others the opportunity to build on his success.

As an activist, Tim was an authentic agent of change and his involvement in disability issues was evident on every level: national, state and local. He was a member of the Maryland Developmental Disabilities Council and served on the boards of several organizations including The Harford Leadership Academy, Family Partnership, and the Maryland Association of Resources for Families and Youth.

He was a past president of The Maryland Association of Community Services, and represented The Arc on the ADA Accessibility Guidelines Federal Advisory Committee. In 2009, Tim was the recipient of the Executive Excellence Award from The National Council of Executives of The Arc (NCE). Tim was considered a major force within NCE particularly on its training activities; his mentorship and leadership skills served the organization well.

All who knew and worked with Tim observed his deeply humanistic approach to his work, especially when working directly with people with intellectual disabilities and their families. The understanding, respect and integrity revealed in those relationships embodied the values he lived out in providing leadership to his chapter in Maryland and to his commitment to people with intellectual disabilities leading full and inclusive lives.

Tim’s colleagues at The Arc Northern Chesapeake Region noted that “Integrity, respect, community building, responsiveness, team, inclusion and self-determination are not just the core values of The Arc, but principles by which Tim lived his life.”

Memorial Details: 

Viewing on Wednesday, January 13 from 2:00 p.m. – 4:00 p.m. and from 7:00 p.m. – 9:00 p.m. at:

Ruck Towson Funeral Home
1050 York Road
Towson, Maryland   21204
Phone: 410-823-1700
Directions are available here:  http://www.ruckfuneralhomes.com/index.cfm

The funeral will be Thursday, January 14 at 10:00 a.m. at:

St. Joseph Parish, Cockeysville
100 Church Lane
Cockeysville, Maryland  21030                          
(410) 683-0600    
http://www.stjoseph-parish.org/

OPM Official Griffin Emphasizes Workplace Diversity
By Joe Davidson
Tuesday, January 12, 2010; A15/The Washington Post

As a woman who uses a wheelchair, Christine Griffin knows a thing or two about discrimination in the workplace.

But now, more than ever, she's in a position to do something about it.

Griffin is in her second week as deputy director of the Office of Personnel Management. Her boss, John Berry, has made her the point person to improve Uncle Sam's record on diversity in hiring and promotions.

"I've done a lot of things in my life where women weren't particularly accepted at the time," she said during an interview in an office with pictures still unpacked. "I've certainly experienced discrimination and know what that feels like."

She has also been a "twofer," someone who fills two demographics, acknowledging opportunities she was offered because someone "particularly wanted a woman with a disability in their workplace."

Griffin brings more than gender and her wheels to the discussion. Her experience extends from the personal to the professional. A labor and employment lawyer by trade, until recently she was a member of the Equal Employment Opportunity Commission, where she wasn't shy about criticizing the OPM. Before that she was executive director of the Disability Law Center in Boston. She is also an Army veteran.

At the EEOC, Griffin launched Project LEAD (Leadership for the Employment of Americans With Disabilities), which was designed to increase federal hiring of disabled people.

Despite that project and other efforts, Uncle Sam's hiring of people with disabilities has been in a steady and disturbing decline. Every year since fiscal 1994, with one exception, the percentage of people with disabilities in the federal workforce has dropped, from a measly 1.24 percent to an all but invisible 0.97 percent in 2006, according to EEOC data. The next year saw a small increase, to 1.03 percent, but the percentage fell to 0.98 percent in 2008.

Latinos are also significantly underrepresented in the federal workplace. They account for 8 percent of Uncle Sam's employees. In other cases, demographic groups may be well represented in the total workforce, but are too few in the upper levels of government. African Americans, for example, are 18 percent of the total workforce, more than their percentage in the general population, but hold just 6.7 percent of the jobs at senior pay levels. Women, representing 44 percent of the workforce, are 27.7 percent of those who make the big bucks.

Griffin joins the agency as it prepares an overhaul of the government's defective hiring process. At "every avenue into the federal government," she said, "I want to make sure that we're also talking about how to increase diversity."

Griffin said agencies should do some introspection and look at their unintended barriers to hiring and advancement. "What is your particular area where you are lacking in advancement for people, and opportunity for people to come in the door, and why is that?" she wants them to ask themselves. "Start doing some barrier analysis."

Too many agency officials regard that kind of activity as time-consuming work that doesn't rise to the top of their priority lists. Instead, it needs to be part of their strategic plan "to be the agency of choice for people who have the skills that I need," Griffin said. It's "getting off your butt and going out there and making people know that you really do want to cast that wide net and get people in the door."

Griffin is praised by people who have worked with her on improving diversity.

"I would give her high marks," said Jorge E. Ponce, co-chair of the Council of Federal EEO and Civil Rights Executives. Her new position provides "a wonderful opportunity," he said, for the EEOC and the OPM to better coordinate their activities.

In 2006, the Government Accountability Office "found little evidence of coordination at the operating level between EEOC and OPM in developing policy, providing guidance, and exercising oversight, despite overlapping responsibilities in federal workplace EEO. . . . Good management practice as well as federal statute and executive order call for coordination, and not doing so results in lost opportunity to realize consistency, efficiency, and public value in EEO policy making and oversight."

Ponce said it is unrealistic to think that the government "cannot find Hispanics with the citizenship and educational requirements to be better represented" in the federal workforce.

To make diversity a greater priority in the government, Berry created an office within the OPM to focus on it. A diversity professional "is going to look at government-wide diversity strategy . . . to create a more diverse workforce," Griffin said. "That's a concrete thing that has been done."

People with Disabilities Recover Benefits
By Catherine Whittenburg, Tampa Tribune
cwhittenburg@tampatrib.com

Thousands of Floridians with developmental disabilities will get another chance to fight state cuts to the services they rely on - even if the state denied their appeals last year.

That includes people like Peter Ciccarello, a 32-year-old Tampa resident who has spina bifida. Ciccarello, who lives with his mother and uses a wheelchair, lost dental care when the spending cuts took effect last year. The state denied his appeal of the cuts, and he now needs almost $7,000 worth of fillings and bridge work.

"This should be based upon the person's needs," he said.

It also includes Sean Mason, a 39-year-old Seffner resident diagnosed with autism, schizophrenia and intellectual disabilities. Yvonne Mason, his mother, has appealed a 42 percent cut in funding for services for her son, which she fears could cause him to wind up in an institution.

Ciccarello and Mason are among the 5,800 patients and families who protested their assignments last year to spending levels, or "tiers," which restrict how much the state will pay for services ranging from therapies to transportation.

In response to an order from the 1st District Court of Appeal, the state Agency for Persons with Disabilities is now tweaking its rules for assigning people to those tiers and re-evaluating the cases of everyone who appealed in 2009. If they wish, they will be able to appeal again when the state reassigns them to a spending tier later this year.

Unlike last year, everyone also will get to make their case - first in an informal hearing with APD staff, and if necessary, before an administrative law judge, APD director Jim DeBeaugrine said.

The agency denied hearings last year to the majority of people who appealed, finding their complaints "legally insufficient." That sparked protests from families, as well as a legal challenge from the Advocacy Center for Persons with Disabilities.

"We don't anticipate denying them this time," DeBeaugrine said.

Those may not be the only changes ahead.

Even as the Agency for Persons with Disabilities struggles to bring its current system into compliance with the court's order, it is also working on a new plan to change the way Florida serves people with developmental disabilities in the future.

"We're committed to getting this right," DeBeaugrine said.

iBudgeting?

The state Legislature designed the tier program in 2007, when APD had a budget deficit of about $155 million. Lawmakers responded by demanding that the agency cut spending on services and divide the 30,000 beneficiaries of the agency's Home and Community Based Services program into spending tiers.

That sent waves of fear and anger through families of the developmentally disabled, as well as the providers paid to care for them. From a purely cost-cutting perspective, the changes largely succeeded. As of last week, the agency had whittled its projected deficit for 2010 down to $26 million.

"I think it was the right decision at the time; there wasn't really any other decision to be made," said state Sen. Durell Peaden, who oversees health and human services spending in the Senate.

Because of the way the cuts were structured, their impacts varied widely. Many people experienced little or no change in services, but others lost as much as half when they were assigned to a tier.

That's one of the problems that DeBeaugrine said he hopes to solve, by moving to a system of "individualized budgeting."

The "iBudget" idea, he said, is to create a computerized algorithm to evaluate the needs of each person, based on a wide variety of factors ranging from their age to their ability to clean themselves.

The computer program would use the information to calculate a customized budget for each person. Families would have significantly more control over how they spend the dollars allotted to them for services than they have under the current system.

If lawmakers approve iBudget this spring, it could take effect statewide as early as 2011.

That sounds better, said Yvonne Mason, Sean's 70-year-old mother and caregiver, but only if the state gets its calculations right. She is concerned that the state will not take into account enough variables - for example, the age of parents who are caregivers for people with developmental disabilities. "That makes a big difference in the care of a person."

It will be up to lawmakers this spring to approve or reject the proposal, just as they will decide how much to spend on services for the disabled in a year when the state faces a budget deficit of more than $2.5 billion.

Peaden, of Crestview, said he hopes to minimize the budget cuts to APD, given the reductions it has already weathered. As for iBudget, "I'm willing to look at anything that maximizes the services they need and cap what they don't," Peaden said. "This is one of the toughest issues we face up here."

Remarks at Lorraine Sheehan’s Memorial Service – 1/6/2010
PAUL MARCHAND, Staff Director, Disability Policy Collaboration of
The Arc and UCP

Today I bring a heartfelt sense of loss and sorrow and deep sympathy from the hundreds of thousands of members and staff of The Arc from throughout our land.

For any of you who may not be acquainted with The Arc, it’s the premier national organization advocating for the rights, benefits and supports for persons with intellectual disabilities.

This New Year marks The Arc of the United States 60th Anniversary.

I’ve been very fortunate to have been a part of this organization for 44 of those 60 years.

Thirty National Presidents have led this organization.

Ten of these are women and they all served with distinction.

Three were particularly distinguished for different reasons in different decades – all were parents of a child with intellectual disabilities.

Dr. Elizabeth Boggs from New Jersey presided over the organization in the early 1960’s. She was an original founder of The Arc; she conceptualized developmental disabilities, she was the foremost expert on Social Security programs related to disability and served for many years as the long time volunteer chair of the national governmental affairs initiative without the benefit of staff.

Dee Everitt from Nebraska was National President in the early 1980’s. Dee was a vigorous advocate for Home and Community Based Services and the elimination of institutions. She fought these battles despite receiving direct threats to her personal well being.

Lorraine Sheehan from Maryland served as National President in the early 2000’s. She was the facilitator of several cross disability collaborations, including the Disability Policy Collaboration at the national level for which I work. She assumed the role of The Arc Governmental Affairs Committee Chair before and after her presidency. Lorraine was a tireless mentor to hundred of advocates, be they self advocates, family members, professionals or policy makers.

To advocate at all levels of our government, often simultaneously, required an amazing commitment of time and energy on Lorraine’s part.

Given her health status throughout her adult life, how she maintained her focus, enthusiasm and vigor mystified all who knew her well.

She possessed the resolve of a lioness so well camouflaged as a peaceful dove.

Her advocacy also required, particularly during her national service which extended for almost 2 decades, substantial time away from her family.

So as we praise Lorraine’s many accomplishments and those accolades she receives are so clearly richly deserved, we should also reflect on the many sacrifices made by her children, her extended family and her housemate Joan.

They supported and inspired her as I’m sure she inspired them.

So thank you, Lorraine, for your many courageous endeavors on behalf of the million of The Arc’s constituents and thank you to all of Lorraine’s family, close friends and colleagues for sharing her with us.

Although the vast majority of families and self advocates that she helped will never know Lorraine, her legacy lives on and we are all the better for it.

NEWS MEDIA ADVISORY FOR FRIDAY JANUARY 8, 2010

VIRGINIA SENATE FINANCE COMMITTEE BUDGET HEARING: DISABILTY ADVOCATES GATHER TO “STOP THE ASSAULT ON HOME AND COMMUNITY BASED SUPPORTS!”

Friday, January 8, 2010, 10:00 a.m., Northern Virginia Community College- Annandale Campus, Ernst Center, 8333 Little River Turnpike Annandale, VA 22003-3796

The Arc of Northern Virginia and over 300 advocates for people with disabilities plan to testify in response proposed cuts to services in Governor Kaine’s 2010-2012 Budget Proposal. The outgoing Governor’s budget proposal is being called “An Assault on Home and Community Based Services in Virginia” according to individuals, family members and providers for people with developmental disabilities.

On Friday, December 18, 2009, Governor Kaine released his budget proposal for the 2010-2012 Biennium, as well as his amendments to the budget for FY09. These budget proposals contain drastic cuts to services for people with intellectual and developmental disabilities. The proposal cuts more than $100 million worth of ID/DD services and more than $270 across all of the Home and Community Based Waivers (Elderly and Disabled, ID, DD, HIV/AIDS, Technology Assisted). The proposed budget essentially guts an already under-funded system that currently ranks 46th nationally in its use of Medicaid dollars in the community.

At the same time as this proposed dismantling of community-based supports, the current administration is continuing plans to build a NEW, 75-bed, state-operated institution in Chesapeake, VA. The proposed rebuilding of this institution represents a major retreat from forty years of state public policy supporting the move to home and community-based supports; and caring for these 75 residents will cost, on average, three times what it would cost to serve a person who meets the same level of need for services in the community.

Advocates will join together to let decision makers know that investing dollars in building community supports for people with disabilities is the fiscally and morally responsible decision to make in this difficult budget climate. Nancy Mercer, Executive Director for The Arc of Northern Virginia states: “We can not go backwards and spend our limited resources in re-building institutions to care for people with disabilities…to be honest Virginia can not afford to build an institution big enough to hold everyone who is in need of services at an average annual cost of $194,000 per person.”

Speakers at the Virginia Budget Hearing will include:

• Individuals with disabilities
• Family Members
• Community Leaders
  
  NEWS MEDIA CONTACT: For The Arc of Northern Virginia: Nancy Mercer, Tel: 703-532-3214 ext. 106 or cell 703-304-8537, nmercer@thearcofnova.org 

East Brunswick man with autism, controversial advocate nominated to federal council
By Karen Keller/The Newark Star-Ledger
January 05, 2010, 6:17AM

Ari Ne’eman keeps a copy of the U.S. Constitution folded in his wallet. It’s a constant reminder that his "war" — his advocacy and activism on behalf of people with autism — is worth fighting, even if it engenders controversy and the occasional death threat.

Eight years ago, the 22-year-old East Brunswick native was an unhappy, bullied child with few friends. At the private special-education school he attended, staff members prepared students for the future by teaching them to wash dishes, he said.

Ari Ne'eman, seen here in East Brunswick, [photo] is the first person with autism nominated to the National Council on Disability.

Today, after a swift and sometimes bumpy ascent in the realm of national autism politics, he is the first person with autism to be nominated for a seat on the National Council on Disability. If confirmed by the U.S. Senate, he also will be the youngest person to serve on the board in at least 20 years, council spokesman Mark Quigley said.

President Obama submitted Ne’eman’s name last month, sparking a decidedly mixed reaction on autism blogs and message boards.

Ne’eman, who sometimes uses aggressive language and who has attacked the views of some of the best-known autism-advocacy groups, is untroubled by his critics.

"The real war is against prejudice, discrimination, lack of support and abuse," he said. "That’s a war I’m proud to say we don’t believe we should be taking any prisoners."

Some find fault with Ne’eman because, in their view, he’s not quite autistic enough. Ne’eman has Asperger’s syndrome, a relatively mild form of autism. Those with Asperger’s typically have difficulty with social interaction, a hallmark of autism. They’re often physically clumsy and intensely focused on a few subjects, almost to the point of obsession.

But they’re also typically of average or above-average intelligence, with good communication skills. Many people with more profound autism can’t speak at all, leading families to suggest Ne’eman isn’t the most appropriate advocate.

Ne’eman’s views and tactics are another matter.

He’s tossed verbal firebombs at Autism Speaks, one of the nation’s best-funded autism groups, accusing the organization of insulting people with autism by directing most of the money it raises to researching autism’s cause rather than helping those who already have the condition.

The exclusive focus on a cure, Ne’eman contends, amounts to medically engineering people like him out of existence.

"We should be spending at least as much money on improving our quality of life instead of trying to get rid of us," he said.

He occasionally complements his comments with guerilla tactics. Last month, he organized a protest outside of Carnegie Hall in New York City, where an Autism Speaks fundraiser was being held, he said. Ne’eman knows he’s a lightning rod, saying he’s received death threats. After one threat last summer, he said, he had to be escorted by police to speak at an event in New Hampshire.

But there’s little debate about his growing voice in the national autism debate.
As founder and president of the Autistic Self Advocacy Network, he’s watched his group spawn sister chapters in 12 other states.

He’s also served on state boards in New Jersey, fighting for the rights of people with disabilities.

The young activist’s efforts come at a time of growing awareness and worry about autism across the country. According to the latest data from the U.S. Centers for Disease Control and Prevention, one in 71 boys and one in 110 children meet the criteria for autism, making it one of the leading childhood developmental diagnoses.

Ne’eman has risen to prominence while still in college. He attends the University of Maryland-Baltimore County on a full scholarship.

Supporters say his voice, however unwelcome to some, is needed now more than ever.

"He’s our future," said Monique Dujue Wilson, the mother of a 23-year-old son who is severely autistic. "Within uncomfortable is honesty."

Staff writer Mark Mueller contributed to this report.

Source: Lebanon Daily News
By CHRIS SHOLLY

Matt Waller, 24, sets a hair dryer for a client. (Lebanon Daily News - Earl Brightbill)

Matt Waller has dreamed about working in a barbershop or a beauty salon since he was in second grade. His dream finally became a reality last summer, when he landed a job at the U-Turn Salon in Palmyra.

Waller, who has Down Syndrome, said he enjoys cutting clients' hair.

"All different types of clients want their hair cut. I like to have satisfied customers," 24-year-old Waller said.

Randy Taylor, owner of the Palmyra salon, said it's great to work with Waller.

"Matt is the happiest and most honest guy I know," Taylor said. "His friendly interactions with clients make their time at U-Turn Salon more enjoyable and fun. I could see Matt's passion for beauty care, and I was eager to mentor him in the industry."

Waller learned how to cut and style hair by attending the Barber Styling Institute in Camp Hill. In January 2006, he earned his license.

His mother, Lisa Waller, helped him with the schooling.

"I drove him back and forth to the barber school and then tutored him through the barber school," she said.

Waller then applied to salons and barbershops throughout central Pennsylvania. Waller said a friend who gets her hair done at the Palmyra salon recommended him to the owner of U-Turn.

At the Palmyra shop, Waller shampoos hair, helps customers with various products and sweeps floors, among other tasks. He works three hours at the shop on Thursdays.

His mother is proud of her son's achievements.

"I think it's great. His cousin is a hairstylist, and one of his sister's good friends got her (hairstyling) license and they both had helped him when he was going to school," Lisa Waller said.

The teacher at the school also helped him, his mother said.

"In life, there are a lot of people who look at people with disabilities and think they won't be able to do that. The teacher worked with him," she said.

To get his license, Waller had to complete a written test as well as do a haircut, curl hair, and do a face shave.

Waller is now working on his manager's license, which would allow him to operate a beauty shop. Ultimately, Waller said, he would like to someday own his own shop.

In addition to working at U-Turn, Waller also has a couple of other part-time jobs; he works at Hoss's restaurant in Hummelstown, where he wraps silverware, and at Paxton Street Home, where he cuts hair. The home provides housing for disadvantaged adults in the Harrisburg area.

Waller's passion has earned him the opportunity to be featured in a statewide campaign called Works for me. He can be seen in TV commercials, billboards, direct-mail pieces, and on the Web. The Works for me program is focused on education people with disabilities about the opportunities for employment, helping them to find training and a job, as well as technology assistance.

Lorraine Sheehan: Honoring an Extraordinary Life

On Wednesday, January 6, a “Celebration of an Extraordinary Life!” honoring Lorraine Sheehan will be held at the Annapolis Loews Hotel Ballroom at 1:30 p.m. Lorraine passed away on December 19 and was an indefatigable disability rights advocate and a treasured member of The Arc family. 

Paul Marchand, Staff Director of the Disability Policy Collaboration is among those who will pay tribute to Lorraine. Other speakers include former Maryland Governor Harry Hughes, elected officials and dignitaries, friends and neighbors and advocates.

Lorraine was an active member of The Arc for many years—serving as President of The Arc of the United States, The Arc of Maryland, and The Arc of the Central Chesapeake Region. As President of The Arc at the time the Disability Policy Collaboration was established, she personally signed the agreement with UCP. 

In her leadership role as President and previously as the Chair of The Arc’s Governmental Affairs Committee, she provided the strongest pro collaboration push from The Arc’s volunteer leadership. In addition, she had been currently serving as the Co-Chair of the DPC Steering Committee.

Please RSVP to sharris@thearcmd.org or to The Arc of Maryland at 410-974-6139 if you plan to attend the “Celebration of an Extraordinary Life!” You are also invited to share your recollections, pictures and stories on Lorraine’s Facebook at: facebook.com/lorrainemsheehan

In lieu of flowers, donations may be made to:

The Arc of the Central Chesapeake Region
931 Spa Road
Annapolis, MD 21401

Lorraine M. Sheehan, 72; fought for rights of disabled
By T. Rees Shapiro – Washington Post
Thursday, December 24, 2009; B06

Lorraine M. Sheehan, 72, a former Maryland secretary of state who championed the rights of people with disabilities, died Dec. 19 at Johns Hopkins University Hospital in Baltimore.

She died of complications from cystic fibrosis. She had been an Edgewater resident for 26 years.

Mrs. Sheehan, a Democrat, served as a Prince George's County state delegate from 1974 to 1983, when Gov. Harry R. Hughes chose her to be secretary of state. At the time she was the third woman to serve in that capacity since the position's creation in 1838.

"Women who have for so long been the backbone of political campaigns are now deciding that they want a piece of the action," Mrs. Sheehan told The Washington Post in 1980. "It takes a tremendous ego to run for public office. . . . A person has to stand up before a group with the attitude: 'I'm the best person for this job.' A lot of women don't perceive themselves as being that kind of person. They don't want to get up on the platform and say: 'Look, I'm smart. I know where we ought to be going, and I can help to get us there.'

Mrs. Sheehan's biggest focus while in the House of Delegates was the creation and funding of programs for people with disabilities. Her son John was born with mental disabilities and was later found to have autism. She introduced the first bill addressing the state Developmental Disabilities Administration's waiting list for residents eligible for service, which Mrs. Sheehan said was too long and underfunded.

A bespectacled, spunky woman who was known to wear ponchos and colored stockings, Mrs. Sheehan was recognized for her public service in 2002 when she was inducted into the Maryland Women's Hall of Fame.

Lorraine Marie Cantin, a native of Manchester, N.H., moved to the Washington area in the mid-1960s. As a delegate, Mrs. Sheehan served on the House Judiciary Committee and the House Ways and Means Committee. She resigned as secretary of state in 1987. Shortly after, she joined Melwood, a nonprofit organization in Upper Marlboro that provides housing, job training and employment opportunities for people with intellectual and developmental disabilities.

In the mid-1990s, Mrs. Sheehan became the public policy director for the Baltimore-based Maryland Disability Law Center and also had a private business as a lobbyist in Annapolis for organizations and issues involving disability rights. For many years, she served as the president of what is now known as The ARC of the United States, a community-based organization for the developmentally disabled.

Her marriage to Peter Sheehan ended in divorce. Besides her son John, of Edgewater, survivors include three children, Peter Sheehan of Hedgesville, W.Va., Niall Sheehan of Laurel and Laura Carr of Edgewater; and seven grandchildren.

When John, now 43, was found to have autism, Mrs. Sheehan refused to institutionalize him as his doctors and educators had suggested. Instead, she crafted legislation in the House of Delegates that would help those with disabilities live on their own in decent housing. Many years ago, Mrs. Sheehan set up a trust to pay for her son's expenses so he could remain in the house where he grew up, in the neighborhood where everyone knows his name.

"Nobody wants to think they are going to die," Mrs. Sheehan told the Baltimore Sun last year. "But it certainly is a relief and comfort to know you . . . have a fighting chance to keep John happy as he is now."

Click here to read obituary in the Baltimore Sun http://www.baltimoresun.com/news/obituaries/bal-md.ob.sheehan24dec24,0,3659931.story

The Arc Mourns the Loss of Lorraine Sheehan

It is with great sadness that The Arc of the United States announces the passing of Lorraine Sheehan. Lorraine died on Saturday, December 19 after a long struggle against pneumonia, compromised by cystic fibrosis. Lorraine was an indefatigable disability rights advocate and a treasured member of The Arc family. She has been an active member of The Arc for many years—serving as a member of The Arc of Prince George's County, and as Past President of The Arc of the United States. As President of The Arc at the time the Disability Policy Collaboration was established, she personally signed the agreement with UCP. 

In her leadership role as President and previously as the Chair of The Arc’s Governmental Affairs Committee, she provided the strongest pro collaboration push from The Arc’s volunteer leadership. In addition, Lorraine was President of The Arc of Anne Arundel County, and Government Affairs Chair and President for The Arc of Maryland.  She had been currently serving as the Co-Chair of the DPC Steering Committee.

Lorraine Sheehan grew up in New Hampshire and moved to Maryland with her husband and family in 1965.  She has four children and six grandchildren.  At an early age, her third child, John, was diagnosed as deaf and “mentally retarded.”  Later, he was diagnosed with autism and determined not to be deaf.  John has significant disabilities and lived at home with Lorraine in Edgewater, MD.

Because of John and his special needs – especially related to his schooling – Lorraine became involved in the disability movement.  She focused her attention on independent living opportunities for individuals with disabilities and later on advocacy on behalf of individuals with disabilities and their families.  It was her passion for advocacy that led to her emerging as one of Maryland’s leading advocates for individuals with disabilities.

Indeed, she became one of the nation’s most powerful voices for our constituency, due in no small part to her profound commitment, keen intelligence and charismatic presence.

In 1974, Lorraine was elected to the MD House of Delegates, where she served for nine years. In the General Assembly, she introduced bills on transportation for students with disabilities and the first bill ever addressing the Developmental Disabilities Administration's waiting list.  In 1983, Governor Harry Hughes appointed her Secretary of State of Maryland for one four-year term.

Because of her expertise in the area of disabilities, Lorraine was appointed a Commissioner to the Anne Arundel County Housing Authority.  She continued to focus much of her work on independent housing for people with disabilities, ensuring that even individuals with the most significant disabilities have an opportunity to choose where they live.

As a public official, she educated other policymakers and the public at large while helping to transform communities into places of inclusion. As a parent, she waged a tireless fight for the rights of people with disabilities and their families. Lorraine mentored many family members and professionals.

Professionally, Lorraine went on to be named the Public Policy Director for the Maryland Disability Law Center; she also worked with the Public Sector Consulting Group. She continued to volunteer her time and expertise, by serving on boards and committees charged with improving the lives of individuals with disabilities. Lorraine will be greatly missed – she was a true force in advancing the rights of people with intellectual and developmental disabilities.

Peter V. Berns
Chief Executive Officer

 

If you would like to send condolences:

 

Joan Scott (Lorraine’s housemate and dear friend)

108 Park Avenue

Edgewater, MD 21037

 

John Sheehan (Lorraine’s son)

108 Park Avenue

Edgewater, MD 21037

 

(It would not be inappropriate to send one card addressed to both Joan and John)

 

Laura Carr (Lorraine’s daughter)

2923 Edgewater Drive

Edgewater, MD 21037

 

The family has requested donations in lieu of flowers be made to:

The Arc of the Central Chesapeake Region

931 Spa Road

Annapolis, MD.  21401

Source: The News Sentinel - Fort Wayne

The excitement on Ieasha Thomas’s face showed when she was looking at the Easter Seals Arc calendar that featured her as Miss June. Arc Client Thomas said it was fun taking pictures for the calendar, especially on the job at O’Charley’s, a restaurant in Jefferson Pointe.

The Arc of Indiana 2010 calendar features people with intellectual and other disabilities in their places of employment throughout Indiana. According to Public Relations Director Tony Belton, Thomas was chosen for her story and because she has been employed at O’Charley’s for seven years.

“How could we not select her?” said Belton.

Thomas almost lost her job because of the downturn in the economy, but with help from her Arc job coach Sandy Frank and O’Charley’s kitchen manager Paul Cole, Thomas was able to learn new skills to keep working at O’Charley’s.

Thomas now prepares foods, doing such tasks as weighing and packaging. She likes her job, but still misses her first job of rolling silverware.

Thomas also works in the Arc workshop. There she rolls binders straps for milk cartons.

“I’ve got lots of friends,” said Thomas about why she likes working at both O’Charley’s and the workshop.

According to Franks, who is also Arc’s lead employment specialist, there are about 30 clients who work at businesses ranging from McDonald’s to Dupont Animal Care. There are about 200 clients in the workshop.

This employment benefits both the clients and the community. According to Benton, people with disabilities are generally more loyal to their employers – they show up on time, won’t change jobs and do their jobs diligently. According to Franks, “They want to be perceived as normal. They want to do anything anybody else does.” Working in the community is an opportunity for people with disabilities to do that.

For Thomas, Frank has seen the affects of Arc. “I’m sure it has made a big improvement to her quality of life, and it has definitely changed her life,” said Frank.

Arc’s slogan is “Creating Solutions and Changing Lives.” This certainly is the case for Thomas, who said she looks forward to working and making money.

Any companies interested in working with Arc can call Franks at 469-2824.

President Obama announced individuals to participate in key administration posts.  One of those individuals was Chester Alonzo Finn, a board member for The Arc of the United States.

From the announcement:

Chester Alonzo Finn, Nominee for Member, National Council on Disability
Chester Alonzo Finn is a Special Assistant with the New York State Office of Mental Retardation and Developmental Disabilities, providing services, supports, and advocacy to individuals with development disabilities and their families; in October of 2009 he was recently appointed to the OMRDD’s Leadership Team.  He is also President of the national board of Self-Advocates Becoming Empowered, Board Advisor to the Self Advocacy Association of New York State (SANYS) and a member of the Justice for All Action Networking Streaming Committee.  Mr. Finn is also an active member of the Board of Directors for The Arc of the United States, the world’s largest community based organization of and for people with intellectual and developmental disabilities. Mr. Finn is blind and has a developmental disability and is committed to fighting for the civil rights of people with disabilities.

By Autumn Grooms

Ryan Barta stood alongside his peers, waiting to see who this year’s Tomah High School homecoming king would be.

The crown was teasingly held above the heads of several seniors on homecoming court before coming to rest on his.

The 19-year-old’s arms shot into the air and the message he signed to the crowd — friends, thank you — was unrehearsed and heartfelt.

He couldn’t say it enough times.

He couldn’t say it fast enough.

“When he was born with Down syndrome, we didn’t have a clue of what to expect,” his mother Linda Barta said.

“We never dreamed something like this would be possible for Ryan.”

Like many special education students, Ryan was included in the classroom at a young age and took the fear out of what it means to have a disability.

He made friends with his classmates and, as he transitioned into high school, became the football team’s water boy and a drummer in the band.

Tomah High School students always welcomed and included Ryan and “have made such a difference in his life,” Linda Barta said.

“What they have given him, I hope he has given back,” she said.

There are many lessons — acceptance, tolerance, appreciation — students learn from interacting with all kids who attend their school, Principal Marlon Mee said, “but it also teaches that anything can be accomplished if they try.”

These important lessons can’t be fully taught in the classroom, Mee said. They need to be applied in the hallways as well as at athletic events and home.

“When I was in high school, the Ryan Bartas of the world were relegated to some obscure section of the school, never to be seen or heard from,” Mee said in a letter to parents.

“An education is more than academics. Some kids may be having difficulty learning geometric equations, diagramming sentences, or locating Wisconsin on a map. However, they are learning about life. They are learning tolerance, compassion and understanding.”

This past year, I was fortunate to meet Ryan Barta and Allysha Morabito, a Melrose-Mindoro High School student with Down syndrome who was crowned prom queen last spring.

Neither lobbied for the title but both cherished the hugs and goodwill that followed once the crown was placed upon their head.

There is so much good that happens every day in our schools from special education students being included in the classroom and other activities.

They learn from their peers and, yes, their peers learn from them.

Let’s all remember this holiday season to think of the good that can happen when we take the time to get to know our neighbors as friends and offer them the respect they deserve.

“I can’t think of a prouder moment or a more emotional moment than at that pep (assembly) when (Ryan Barta) was announced king,” Mee said.

“The kids were standing up and cheering. I can’t describe it.”

I can.

It was inspiring.

 

No way to refer to the vulnerable
By Randolph Siegel
December 18, 2009

Imagine a prominent magazine, winner of a National Magazine Award for "general excellence," publishing a column that makes fun of developmentally delayed children. Or an Emmy Award-winning comedy show in which a leading character has sex with a mentally disabled woman and then mocks her disability. Or a popular Web site, with 3 million monthly visitors, that has more than 600 cruel references to "retard" on its site. No need to use your imagination, because these are just three examples of how the media elite too often ridicule the millions of Americans who are cognitively impaired due to debilitating brain disease or injury.

As a member of the media who has a developmentally disabled child, I cringe when I see snark like this from New York magazine savaging an interview with the actor Alec Baldwin in Parade magazine: "The whole thing reads like it was As Told To a slow third-grader with vocabulary issues. ... This thing sounds like the dumb-Charly (sic) parts of 'Flowers for Algernon.' "

Or this season's episode of HBO's "Curb Your Enthusiasm" in which Larry David's sidekick, Jeff, seduces a mentally disabled character and then belittles his victim after she speaks out.

Or headlines on the popular Gawker site such as "Retard Homo Newspapers Scared of Awesome Commenters!" or "Retard Nude Harvard Porn Kid: Worth Your Vomit?" surrounded by ads from some of America's largest advertisers.

Call me overly sensitive. Accuse me of being humorless. Say whatever you want. But if the true measure of a society is how it treats its most vulnerable citizens, then these mean-spirited attacks are not only indefensible, they reinforce the intolerance and discrimination that these children and adults often face in their schools, communities or workplaces. I had never met a "retard" until my daughter was labeled one after untreatable epilepsy ravaged her cognitive development. It's been a painful, frustrating journey for us. Millions of other American families have experienced similar shattered dreams, with a neurologically damaged child, parent or friend -- or someone they love who has returned home from Iraq or Afghanistan with a traumatic brain injury. Over the years, I've bit my tongue whenever I hear "retard jokes" at business functions -- or see a movie like DreamWorks' "Tropic Thunder" in which "retards" are vulgarly disparaged in a lame effort to generate laughs -- or hear a song like the Black Eyed Peas hit single "Let's Get Retarded." Even when President Barack Obama described his subpar bowling skills by making an insensitive joke about the Special Olympics on "The Tonight Show with Jay Leno", I tried to internalize the pain. But that's a losing strategy and no longer justifiable.

As Americans with intellectual disabilities are increasingly stigmatized and dehumanized in our media and popular culture, it's time -- now more than ever -- for their families and friends to help them fight back.

Randy Siegel is president of Parade Publications.
Copyright © 2009, Chicago Tribune

December 16th, 2009 – United Feature Syndicate

A CLASS Act Deserves Support

By Cokie Roberts and Steven V. Roberts

We are the lucky ones. Not only are we blessed with two mothers in their nineties—we are doubly blessed with mothers whose resources cover their care. That’s not the norm in America, where the aging population’s need for long term care imposes harsh economic as well as emotional stress on many families. A provision of the health care bill aims to offer some relief to those families and we’re all for it.

The Community Living Assistance Services and Supports Act, called CLASS, was one of Teddy Kennedy’s pet proposals in recent years. It’s a pretty simple idea. Workers would voluntarily pay into a fund for at least five years and then be able to draw out from it if they become disabled by age or illness. A daily stipend tied to the degree of disability, to be set by the Secretary of HHS but probably starting at about $75, would go for whatever was needed—someone helping out at home, transportation to senior day care, installation of handicap friendly devices—allowing many individuals to remain in their communities and out of costly nursing homes.

For people who aren’t as lucky as we are, that’s often the only choice. Their parents, or a disabled brother, might need assistance in eating, bathing, dressing or moving from a chair to the bathroom. A small stipend can make all of the difference. It can mean an elderly person can stay at home with some assistance getting dressed and fed. It can mean family caretakers can keep their jobs if someone can cover for them at home in the hours they are away from a live-in parent.

As it is now, in order to receive care many disabled and elderly people are forced to divest themselves of all their assets so they can qualify for government assistance through the Medicaid program. And in many places that means moving to a nursing home. We taxpayers are footing the bill for those nursing homes, which usually run about $200 a day.

Under the long term care plan now before the Congress, the people who receive the care pay for it. Premiums would be automatically deducted from paychecks unless a worker makes a positive determination to opt out of the program. And the law as drafted by the Senate specifically states “No taxpayer funds shall be used for payment of benefits.”   The program is designed to pay for itself through premiums and interest on the trust fund generated by those premiums, which can’t be touched for five years.

In the first ten years of the program the Congressional Budget Office expects the CLASS provisions to add about $72 billion to the federal coffers--a huge chunk of change tempting to lawmakers who would use it to draw down the deficit. That’s a legitimate fear, given the Congressional track record on other trust funds. And a “Sense of the Senate” amendment insisting that the CLASS fund should not be used for anything other than long term care doesn’t do much to quell the skeptics who believe the program will eventually grow into a massive budget buster.

And those skeptics abound, some of them spurred on by the insurance companies that sell long term care policies. Despite language passed by the Senate that requires CLASS to stay sound over a 75 year period, critics insist that the program is bound to go broke when the number of people who need long term care, now about ten million, more than doubles with the retirement of the Baby Boom. Premiums will go so high in order to keep up with benefits, they argue, that no one will buy them so taxpayers will have to subsidize them.

There are lots of reasons to believe that won’t happen. But even if it did, it would be no worse for taxpayers than what’s happening right now. We are paying about $100 billion a year for long term care through Medicaid and that number is going to go geometrically higher if no other provision is made for people who need help. How can forcing people into poverty so the government can pay for them be better than setting up a program where workers pay for themselves? How can pushing people into nursing homes be better than letting them stay in their houses? As a caller to a public radio program on the CLASS plan asked, “Why not try something where I can exercise my own responsibility for my future?”

The Huffington Post – 12/17/09
Funding Cuts May Close Group Homes In NC

Group homes for people with developmental disabilities in North Carolina are in danger of closing after the state reduced funding, reports Dwight Otwell for the Cherokee County Scout. Funding was cut to help fix a statewide budget crisis. "[The homes] are having to rethink every sheet of paper they use," said Yvonne Trent, a social worker in Cherokee County.

In Unaka, N.C., 12 men and women with learning and developmental disabilities live in Autumn Halls, a group home owned and operated by Will Hayes and his daughter, Shelly Debty. "If we can't take care of [the residents] and feed them I would rather shut the doors," said Hayes, who often works 18-hour days to make up for staff whose hours have been cut back. "We have had to scale back on everything a little bit at a time," Debty told the Scout. "If we closed I don't know where [the residents] would go."
http://www.huffingtonpost.com/2009/12/17/funding-cuts-may-shutter_n_395641.html

Tuesday, December 15, 2009
Trish G. Graber
STAR-LEDGER STAFF

A male resident at a Burlington County state facility for people with developmental disabilities died Friday, the second "unexpected" resident death there in two months.

Pam Ronan, spokeswoman for the state Department of Human Services, said the man, who was in his mid-50s, was found unresponsive early Friday at the New Lisbon Developmental Center.
  
"He was helped out of bed in the morning, dressed and helped into a chair in the lounge. When staff came to take him to breakfast, he was unresponsive to the staff and 911 was immediately called," Ronan said.

The man was taken to Virtua Memorial Hospital in Mount Holly Township and died six hours later, according to state officials.

The cause of death has not been released, and officials would not disclose the man's disability.

An investigation into the "unexpected" death is under way, Ronan said. To date, no employee disciplinary action has been taken and the state is awaiting results of an autopsy.

The man had been in state developmental centers since 1965. He had lived at New Lisbon, a facility with 417 residents, since the 1980s, Ronan said.

New Lisbon Developmental Center is one of seven state-run facilities serving people with developmental disabilities, such as cerebral palsy and autism.

Ten people have died there this year. On Oct. 12, a man living at the center died after choking on a sandwich. An unidentified employee was placed on leave without pay pending a Department of Human Services hearing scheduled for January. Ronan said it was the only case this year resulting in follow-up disciplinary action.

The Burlington County center has had a history of problems. In 2002, the Centers for Medicare and Medicaid Services found residents had been deprived of adequate medical and psychological care and were left unprotected from abuse.

The Department of Justice opened its own investigation that year. In 2004, the state agreed to four years of independent monitoring of practices at the New Lisbon center. That monitorship, which was extended one year, ended in August.