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Senate approves Rosa’s Law

May 28th, 2010

The Arc responds to “Disabled Face Hard Choice as States Slash Medicaid”

May 27th, 2010

To the Editor:

“Disabled Face Hard Choice as States Slash Medicaid” portrays the harsh and increasingly painful realities of Medicaid budget cuts affecting people with disabilities, especially those with intellectual and developmental disabilities.

At The Arc of the United States, an organization which serves people with intellectual and developmental disabilities and their families throughout the country, we are hearing and experiencing hundreds of similar stories of lives being disrupted due to these cuts with states putting no viable alternatives in place. These disruptions in many cases create life threatening situations for the individuals that need critical personal supports to live, work, and derive satisfaction from their lives.  Drastic cuts such as those described upend the quotidian lives and routines of individuals and families who rely on a systematic yet fragile network of support.

When cuts to Medicaid services to people with disabilities result in a withdrawal of essential supports to engage in fundamental life activities that many of us take for granted, such as not being able to get out of bed, or not being able to feed or toilet oneself, then it is nothing short of a violation of the civil and human rights of these Americans. Cuts in funding further destabilizes the economic health of families that are doing all they can to support their loved ones.  This will have an unprecedented domino effect for states, which if left unchecked, will exacerbate the already crushing effects of Medicaid cuts.  These families have saved state governments millions of dollars by providing care to their family member in their homes and in their communities. It is unconscionable that states are primarily making cuts in home and community based services that directly impact these families, while some continue to fund incredibly inefficient and costly institutions.  With the Health Care Reform Act recently enacted, we are gravely concerned that the promise of health care reform will be compromised significantly by states’ decisions to not partner with the federal government as we seek to improve health care and long term care services and supports, while at the same time minimize the costs and maximize outcomes.  

We recognize that these tough economic times call for difficult decisions by elected officials in recalibrating federal, state, and local budgets, but what cannot be allowed to happen is for essential supports and services to be withdrawn from individuals with disabilities.  A solution must be found through the collective commitment of our nation’s leaders to address this problem and through the shared values of our citizenry in ensuring that we care for those among us who are most vulnerable. Solving the budget crisis on the backs of those with significant intellectual and developmental disabilities and their families is not the answer.

Sincerely,

Peter V. Berns, CEO
The Arc of the U.S.

***

Disabled face hard choices as states slash Medicaid

By Clare Ansberry, The Wall Street Journal

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.

To read the rest of the article…

A Day at the Race

May 24th, 2010

The Noblemen & Hope House Foundation present a “Day at the Race” with the 2010 Belmont Stakes Party – the only race that matters!

HAMPTON ROADS, Va. – (May 2010) –The Norfolk Noblemen and Hope House Foundation are teaming up again to throw the party of the year the 2010 Belmont Stakes Party! The event will be held Saturday, June 5, 2010 from 2PM – 7PM on the grounds of Talbot Hall located at 600 Talbot Hall Road in Norfolk.  The Belmont Stakes is the race that matters!  It’s the last leg of the triple crown and the Noblemen and Hope House are bringing the experience to Norfolk.  Tickets available for minimum donation of $55 and are available at www.thenoblemen.org. Tickets are limited so get your ticket now!

The Belmont Stakes is coming so that means it’s time for the girl’s to grab their big hats and sundresses and the guys to grab their sunglasses and head outdoors for a day of horse racing at one of the areas largest and most beautiful outdoor venues in the city of Norfolk overlooking the Lafayette River.  This all day party will include the race on the showing of the Kentucky Derby and Preakness Stakes races and a live feed of the Belmont Stakes, which is the last leg of the triple crown horseracing, all show on two giant projector screens, all you can eat southern style buffet, beverages, silent auction, Derby games, Best Hat Contest and live music.

Join us for the biggest and ONLY Belmont Stakes party to hit Hampton Roads that will surely become an annual event.  Proudly sponsored by BobFM.

The Norfolk Noblemen and Hope House Foundation are both non-profit organizations in the Hampton Roads area which dedicate their time and energy to helping those in need. The Noblemen are dedicated largely to children and Hope House focuses on independent living services for adults with developmental disabilities. All proceeds from this party will benefit those in need. Join us and be part of the solution…all while having a ball!

For more information log onto www.hope-house.org or www.thenoblemen.org

What would you do if you witnessed verbal abuse?

May 20th, 2010

By Andrew Sullivan, ABCnews.com

A hard-working supermarket clerk is bagging groceries at the end of the express checkout lane. He’s doing a good job, but an impatient customer checks her watch and starts to criticize.

“Hurry up,” the customer harps. “I don’t have all day.”

Rude customers are nothing new, especially in a grocery store located on a busy street in New York. What makes this scenario so objectionable is that the person bagging groceries has Down syndrome, and the customer starts to use indefensible language.

“Can you not understand me?” she yells, “You’re absolutely retarded!”

Would you stand up and say something if you witnessed this cruelty?

To find out how customers would respond to such a scenario, we set up our “What Would You Do?” hidden cameras in a grocery store in Brooklyn, N.Y. While the scene described may seem extreme, it echoes behavior that happens all too often.

In this very store, a grocery clerk named Elvis — who has an intellectual disability — has been stocking shelves for more than a decade. His boss, Ivan, calls Elvis “the best,” and holds him up as a standard for all other employees. Unfortunately, customers sometimes berate Elvis, using words like “stupid,” “idiot” and — the most hurtful — “retard.”

Madeline Will of the National Down Syndrome Society knows how this word damages people with special needs.

“It makes them feel less valuable, makes them feel less human,” she said. “It’s important to say, again and again, this is wrong, this is not fair, this is not how we treat other people.”

But will customers take a stand when they see a person with special needs being verbally abused?

To find out we hired Josh Eber, an actor who has Down syndrome. Josh has spent his life acting opposite Muppets on “Sesame Street” and A-list actors in Hollywood movies, but for two days he played the part of a grocery clerk facing profound ignorance supplied by other actors, posing as customers in line.

“You’re absolutely retarded, dude! You have to go faster,” our actress yelled as Josh bagged her groceries. Behind her, a woman’s jaw dropped.

To read the rest of the story and watch the video click here.

Arc Action Alert: Call to save FMAP

May 5th, 2010

Action Alert from The Arc of Virginia

The clock is ticking on state budgets.  Nearly all states are finalizing their 2011 budgets that begin on July 1.  And many have already factored in an increase in the federal governments share of Medicaid (known as the federal medical assistance percentage (FMAP)).  At least 25 states including Alabama, Alaska, California, Colorado, Connecticut, Florida, Georgia, Idaho, Illinois, Iowa, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nevada, New Jersey, New Mexico, New York, Pennsylvania, Rhode Island, Washington and Virginia are already relying on this increased funding in their FY11 state budgets.

Without swift enactment of a six-month FMAP extension, states will be forced to make very deep cuts in programs, including home and community based services, supported employment, dental care and even basic health care.

Congress must pass the FMAP extension NOW.

Several members of Congress have drafted a “Dear Colleague” letter to urging the leadership in this House of Representatives to help enact legislation to extend the Medicaid FMAP.  Click here to read the letter.

Click here to TAKE ACTION!

 Please call your representative’s office as soon as possible.  The phone number and sample talking points are provided when you click on the “Take Action” link.

 What to say:

• May I please speak to the staff person who covers health?
• I am calling to urge Representative _________________to sign-on to the FMAP Dear Colleague letter being circulated by Representatives Pingree, Baldwin, Green and Capps.
• People with disabilities depend on Medicaid for their very survival. Without an extension of the Medicaid FMAP increase, we will lose vital services.
• The deadline for signing on is the end of this week. Offices that agree to sign-on should contact jennifer.taylor@mail.house.gov in Rep. Pingree’s office.

Please call. The reality is that staff on Capitol Hill rarely read constituent email anymore.  There is just too much of it to keep track of.  The best measures they have about what constituents need are telephone calls or personal visits.

 Thank you in advance for your advocacy.

02 Ability Awards emphasizes inclusion

May 3rd, 2010

By Caroline Madden, Irishtimes.com

This is the fourth year of the O2 Ability Awards programme, which showcases organisations that champion change in the area of disability at work and in wider society.

This year’s winners will be revealed at an awards ceremony on May 12th, but here we give a sneak preview of three of the 38 shortlisted companies.

Microsoft’s Irish operation has been proactive in terms of embracing equality issues, particularly when it comes to making their products accessible to customers with disabilities.

All of the technology giant’s key product lines like Windows and Office incorporate functionality to assist people with disabilities such as visual impairment in accessing these products.

Cathriona Hallahan, managing director of Microsoft’s European Operations Centre in Dublin, says that the company takes the issue of accessibility as seriously as the reliability, security and compatibility of its technology.

“It makes sense from a business imperative perspective,” Hallahan says. “At Microsoft we focus on the ‘ability’ part [of disability].

“What is the person’s capability, what are they able to do and what can we do to make that as easy as possible?”

The company has also hired a young graduate, Stephen Campbell, who is visually impaired and hopes to compete at the 2012 World Paralympics.

Campbell will start an internship in July as a project manager in Microsoft’s development centre and will work on improving software accessibility for people with visual impairments.

Microsoft has a diverse customer base and therefore its workforce should reflect that diversity, Hallahan continues. “It helps us in our product design, and engagement with the end customer, if we can reflect that in the workplace.”

Trinity College Dublin has also made this year’s shortlist.

One of Trinity’s key values is inclusivity, in relation to both students and staff.

“Disability should not be a barrier to education,” says Trinity’s chief operating officer Tony McMahon. However ensuring that the campus is accessible to all presents a number of challenges, as it is 400 years old and some of the buildings are listed.

As a result, the college has tread carefully to balance equality legislation with planning restrictions.

A ramps programme has just been completed in the front square of the campus and planning permission has been granted to create a path through the square.

Some of the famous cobblestones will have to come up for this project, which will be carried out during the summer, but it will make access far easier for wheelchair users.

On the residential side, as part of a recent building refurbishment job, a number of apartments in Front Square have been fully adapted to accommodate people with disabilities.

Trinity has also tailored its recruitment process so that it is more practical, in an effort to create a level playing field.

The process is still objective but focuses more on the skills required to carry out the job in question, rather than basing the recruitment process solely on how a candidate performs in a formal interview setting.

McMahon says that the business case in favour of the inclusion of staff and students with disabilities in Trinitys community is clear.

“There are lots of people who can contribute in all sorts of ways. The fact that they have a disability might be totally incidental to their ability to perform,” he adds.

“Disability and excellence are not incompatible.”

Waterways Ireland, a cross- Border body tasked with managing and developing inland waterways for recreational purposes, believes that Ireland’s waterways are “there to be enjoyed by everybody and accessed by everybody”, says chief executive John Martin.

“Nobody should be debarred if at all possible from using waterways and additional facilities. It’s always been our view that . . . the choice should be yours. It’s an issue of choice instead of ability.”

Read more…

The 26th Annual Stockley Gardens Spring Arts Festival

May 3rd, 2010

Hope House Foundation announces the dates for the 26^th Annual Stockley Gardens Spring Arts Festival—May 15-16, 2010—at the Stockley Gardens Park in the Ghent section of Norfolk.  The park is located on the corner of Stockley Gardens and Olney Road in Norfolk.  The hours of the festival, which is free and open to the public, are Saturday, 10:00 a.m. to 6:00 p.m. and Sunday, noon to 6:00 p.m. All proceeds benefit Hope House Foundation.

Over 150 artists have been selected to exhibit at the festival, which offers exhibition opportunities in every fine-art medium, such as painting, ceramics, sculpture, photography and jewelry.

Specialty food items will be available from many area vendors throughout the weekend. Vendors include local favorites Ben & Jerry’s, My Dad’s, Hawaiian Sno, and Eat-a-Pita.

Local musical talent will be featured over the two days, and will include well-known favorites such as the Jim Newsom Quartet, Skip Friel, Ampersand, and Fat Tony Band

The awards for the festival will be presented at the After Hours Party/Artist Award Ceremony to be held on Saturday evening from 6-8 p.m. at the stage in the park.  There will be over $5,000 in artist awards.  A list of all award winners will be displayed at the Hope House Foundation Hospitality Booth on Sunday, May 16^th.

The student exhibition will feature high school students selected to compete for cash awards, with the Futures Awards also being presented at the Artists’ Reception on Saturday evening.

The festival judge will be Ben Dallas from Chicago, Illinois.  Mr. Dallas is an artist who received his undergraduate degree in Art History from Indiana University in 1969 and an MA  in Art History from the University of Illinois in Champaign/Urbana in 1971,  Dallas has participated in many solo and group exhibitions locally and internationally.

The Stockley Gardens Arts Festival poster design for this spring was created by artists EJ Toudt and Hunter Spencer.

For more information log onto www.stockleygardens.com

Proud Sponsors of the event include: Miller Oil, STIHL, QVC, The Ghent Business Association, Ferguson Enterprises and Media partners Bob-FM, WNIS-WTAR, PortFolio, WHRO, and Hampton Roads Magazine.