In The News

Faces of Service

July 17, 2008

For full report see: http://www.vaservice.org/go/volunteer/profile/P0/

Ken Cohen isn't just a volunteer, he's a superhero. For 125 disabled persons in Hampton Roads, Cohen is there to help on a daily basis - whether it's helping them pay their rent or filling their refrigerators. Each year, he serves more than 250 hours as a volunteer for Hope House Foundation, a nonprofit organization providing support for adults with developmental disabilities so that they may live in their own homes. Cohen's unwavering commitment to advance the cause of those in need lies deep in his heart. "I believe every human being is important. Every human being has something to do, not just for them, but to make a difference in the world," he says. In addition to giving his time to Hope House on every level, Cohen actively volunteers for a number of other organizations, including the Jewish War Veterans Monument Fund, the American Diabetes Association, and St. Jude's Children's Research Hospital. When he's not busy volunteering and working full-time, he's busy marketing the cause of Hope House throughout the community. Find your passion and start your new life as a superhero.

Report details needs of Virginia's disabled

June 16, 2008
For full report see: http://www.vaboard.org/biennial.htm

By Dionne Walker, Associated Press Writer

Richmond, VA - Virginia must reduce the number of individuals with disabilities residing in institutions, particularly youth, according to a report that also highlights lagging test scores and graduation rates that suggest schools aren't reaching some developmentally challenged students.

It comes as the number of children diagnosed with conditions like autism increases across the commonwealth, and the need increases for early intervention to improve their educational and professional future, according to a report issued by the Virginia Board for People with Disabilities.

The board, which advises the governor, state health officials and lawmakers, also issued an assessment in 2006.

"Many of the issues actually, unfortunately, are the same as they were in 2006, which tells us we still have a long way to go," said Heidi L. Lawyer, executive director of the board.

Triumphs include the initial passage this year of legislation that scrubs state codes of the term "mentally retarded," considered a pejorative by some. Also lauded is the formation of a Community Integration Advisory Commission in state statute to monitor state efforts at easing disabled citizens into community care settings instead of hospitals.

But the report highlights room for improvement in several areas, among them, access to affordable housing and reliable transportation, especially in rural regions.

The report also says the state needs stronger disability-sensitive emergency preparedness, in light of weather emergencies like tornadoes that pummeled central Virginia this spring.

But the report's strongest suggestions concern youths.

The report cites communities across the state where residents resist having group homes in their neighborhoods. Meanwhile, Medicaid waivers designed to support families overwhelmed by caring for children with disabilities in the home and provide services to adults with disabilities in the community have limited availability and extensive waiting lists.

In turn, Lawyer said many families feel forced to send their children to institutions.

The report urges the state to eliminate the institutionalization of children and young adults below age 21.

"Families should never have to make the difficult decision to place their children in an institutional setting because they cannot obtain the services and supports they need," said the report, which also recommended Virginia lawmakers study reasons for admissions of children to training centers and other nursing facilities, as well as the impact of long-term institutionalization on families.

There were 58 children in private nursing facilities in fiscal year 2007. That's down from 96 in 2004.

"This year we actually found the number of children being institutionalized was lower, but there are other states, like Georgia, that have really put a very large focus on indicating that children need to be with a family," Lawyer said.

Other recommendations concerned the education of the state's approximately 172,000 students with disabilities receiving special education services.

In Virginia, public schools teach students with disabilities using individualized education plans, or IEPs, which are crafted to meet a student's unique needs. Schools also are urged to teach these students in the least restrictive environment possible - that is, in a regular education classroom rather than so-called special education classes if possible, Lawyer explained.

But at public comment forums the board hosted across the state, parents complained of schools that channeled students into special needs classes, and teachers with few expectations of the students.

They pointed to test scores: During the 2006-2007 school year, 58 percent of students with disabilities passed state math assessments, compared to 80 percent of all students.

The gap was similar with English and science scores, with 62 percent and 67 percent passing respectively, compared to 85 percent and 88 percent among all students.

The report recommended the state require public institutions of higher education to mandate special education coursework for students in teacher training programs; re-establish a preparation program for teachers of students with vision impairment at a state college or university; and encourage middle and secondary schools to offer American Sign Language as a foreign language.

It coincides with dramatic strides among the disabled. Advocates point to new technologies enabling those with severe disabilities to live longer and more productive lives; at the same time, physicians are diagnosing autistic children earlier and increasing the chances of early intervention with their care.

Their parents want those children to be better prepared for futures that may have been just a dream in the past.

"That equal opportunity is really, really critical and I think that's what parents are really looking for - the opportunity to ensure their children have the same access to the general curriculum," Lawyer said.

Lawmakers will use the information to help formulate policies for the state's approximately 1.3 million disabled citizens.

The Arc of Virginia Presents Delegate Kirkland Cox with 2008 Advocate of the Year Awar

On June 19, 2008, The Arc of Virginia will present the "2008 Advocate of the Year" award to Delegate Kirkland Cox of the 66th District to honor him for his advocacy on behalf of "A Life Like Yours" for people with intellectual disabilities and their families. Delegate Cox was instrumental in increasing the General Assembly's commitment to end the wait for the Mental Retardation (MR) Waiver, the funding mechanism that provides community-based services such as residential and employment supports to people with intellectual disabilities. There are currently over 4,300 people with intellectual disabilities waiting for the Mental Retardation Waiver; 370 live in Chesterfield County.

Delegate Cox worked tirelessly on behalf of people with intellectual disabilities and family members during the session. Thanks to Delegate Cox's advocacy, the 2008 General Assembly session resulted in funding for 600 new MR Waivers to be phased in during the upcoming fiscal year beginning July 1, 2009.

"Delegate Cox and other legislators had very tough budget decisions to make due to the tight revenue situation this year. He stepped up and worked with the other budget conferees to make sure the maximum number of waiver slots were in the final budget. This will mean so much to those families who will now end up with services," said Howard Cullum, The Arc President.

Executive Director of Chesterfield Community Services Board, George Braunstein, described Delegate Cox as "a steadfast advocate for the needs of people with intellectual disabilities. This year, facing a significant state budget challenge, he found a way of delivering beyond our expectations."

"We just want to thank Delegate Cox so much for advocating for us. We felt that he really understood us and that his heart was in the fight," said family member Kathryn Carfrey. After spending years on the MR Waiver wait list, Kathryn's daughter Colleen recently received an MR Waiver, which will provide the supports she needs to live "A Life Like Yours" in the community. Thanks to Delegate Cox's efforts, there will be 600 stories like Colleen's in 2009.

The Arc of Virginia will present Delegate Cox with the Advocate of the Year award on Thursday, June 19, 2008 from 5pm to 6pm. The presentation will take place at the Chesterfield Community Services Board Rogers Building, located at 6801 Lucy Corr Blvd., Chesterfield, VA. For more information, please contact Jamie Trosclair at 804-649-8481, ext. 101 or via email at jtrosclair@arcofva.org.

When Crisis Hits the Disabled Limited Options for Support and Housing Exist for Aging Caregivers and Their Children

By Clare Ansberry, April 29, 2008, The Virginian-Pilot

Seventy-nine year old Anna Dromgoole arrived at the Plano Specialty Hospital a month ago with severe wounds on her legs. Her 41-year-old son, Kent, who has Downs Syndrome, was at her side.

Ms. Dromgoole refused to be admitted unless Mr. Dromgoole could stay with her. She, like thousands of other aging caregivers across the country, had no place for her developmentally disabled child to go. When crisis hits, they find themselves at the mercy of strangers.

In their case, the stranger was Beth Lambdin, Plano Specialty's clinical liaison, who found a semi private room for the Dromgooles, thinking they would be back home in a few weeks.

That scenario fell apart when Ms. Dromgoole went into respiratory arrest. That leaves her son, who himself has since been hospitalized, with no one other than Ms. Lambdin to turn to and nowhere to go once he is released from Plano Specialty later this week.

"I'm his one constant," she says. "I'm really no one, just a stranger who met them three weeks ago."

That Ms. Lambdin, an acquaintance of less than a month, may end up housing Mr. Dromgoole speaks to her character. But it also underscores the limitations of the nation's programs to assist those with developmental disabilities, especially in emergencies, which promise to hit more often as the nation's caregivers grow increasingly frail. "We have not addressed the needs of aging caregivers," says Susan Murphree of Advocacy Inc., a federally funded protection and advocacy system for Texans with disabilities. "One of the things we don't have is help for people in crisis situations."

An estimated 2.9 million people with intellectual or developmental disabilities or some significant functional limitation live with caregivers -- mainly parents -- who are 55 years or older.

As they age beyond their caregiving capacities, as Ms. Dromgoole apparently has, their children need a formal and supported living arrangement. Unfortunately, there aren't enough of those arrangements.

About 80,000 people with developmental disabilities nationwide are on waiting lists for various services to help them live in the community. Texas , alone, has about 35,000 people waiting for home and community services, in spite of funding last year to serve additional people.

Spending for such programs continues to increase annually, although levels vary by state. It reached $2 billion last year, which represented a 10% increase, says Charlie Lakin, who researches residential programs at the University of Minnesota . "But the reality is, it's not growing enough to meet the demand."

Moreover, options may narrow further as budget-strapped states try to hold down spending and the federal government looks for ways to control spending for Medicaid -- the main source of funding such programs -- the concern is that options will further narrow.

Mr. Dromgoole's parents divorced when he was five and he has been alone with his mother since, most recently sharing a condominium.

His mother kept him close to her, taking him with her when she cleaned houses, played bingo and bowled. He took out the trash, got the mail and once had a job bagging groceries. "I help my mother plant some flowers and cut the yard," he says.

Many people in Ms. Dromgoole's generation didn't expect their children with various developmental problems to outlive them and didn't explore options for them to live on their own. In some cases, they were afraid that something bad would happen to their children without their attentive eye or they were frustrated by lack of options when they did look.

As she got older, Ms. Dromgoole had a harder time getting around. Her circulation was bad. Cuts on her legs wouldn't heal and became severe wounds. Several weeks ago, when his mother couldn't get up from the couch and he couldn't lift her, Mr. Dromgoole called 911. "She's real sick right now," he says.

At that point, although she didn't realize it at the time, Ms. Lambdin became his defacto caregiver. That first week, when both mother and son were at the hospital, Ms. Lambdin tried to keep Mr. Dromgoole, a likeable outgoing man, engaged. She brought him coloring books and paints and took him to Firehouse Subs, where he ordered an oversized sandwich dubbed the "Wreck."

"He's verbal and independent. He just can't live alone," she says. "He was never taught those life skills."

When his mother's condition worsened, Ms. Lambdin realized that the short term stay she envisioned wasn't going to happen and that Mr. Dromgoole might not be able to return home.

She called every number in Ms. Dromgoole's little phone book and found one living relative -- a first cousin in Louisiana, herself elderly and with a disabled child. Neighbors and friends voiced concern but are likewise older.

Various social service agencies offered untenable solutions. One said Mr. Dromgoole could get emergency help if he was left at a homeless shelter. Groups that work with the developmentally disabled had an opening in a supervised residential program nine hours away in San Antonio , but nothing closer. Ms. Lambdin doesn't want to move him that far from his mother.

She called her friend, Travis Fogle, at Silverado Senior Living, a well-regarded private pay home for those with Alzheimer's and dementia. Silverado, she knew, would take people for three days in an emergency situation. Mr. Fogle extended that stay for a week and a half, at no cost.

Mr. Dromgoole flourished there, putting vases with daisies and carnations on dining room tables, and helping to feed residents, who couldn't feed themselves. He went ballroom dancing, to his first hockey game and saw an Elvis impersonator. Staff trimmed his dark hair and cut his long nails, washed his clothes and his mother's, too. Mr. Dromgoole requested and received simple meals he was accustomed to -- corndogs, macaroni and cheese and skillet fried potatoes and onions.

"We just wanted it to be a positive experience for him," says Mr. Fogle. It was, but it was also unsustainable. It would cost more than $80,000 a year for him to live there and Mr. Dromgoole receives only $1,200 a month in Social Security.

"They did as much as they could," says Ms. Lambdin. Some Silverado families are trying to raise money for him to return.

With Mr. Dromgoole leaving Silverado, Ms. Lambdin asked Dr. John Lavery, Plano Specialty's medical director, if he could return as a patient. She had noticed swelling on Mr. Dromgoole's legs and suspected cellulites. After an examination, he was admitted. "He had a medical condition," says Dr. Lavery, declining to elaborate. Medicare is paying for his stay, although Mr. Dromgoole will be responsible for his $996 deductible.

He is responding well to treatment and will likely be released in a few days.

In the meantime, he watches wrestling on TV and calls Ms. Lambdin several times a day. He asked for a birthday cake for his mother, who turned 80 Monday. Ms. Dromgoole remains on a ventilator. When Mr. Dromgoole visits her, he sings "Peaks and Valleys," kisses her on the forehead, and says "Momma, you need to get better."

Ms. Lambdin continues to search for an appropriate local residence for Kent . If nothing materializes, she will bring Mr. Dromgoole home to live with her husband and three young daughters, ages 11, 9 and 5. The stairs on their split-level home would be hard for Kent, who weighs about 260 pounds, but not impossible.

"I've got feelers out everywhere," says Ms. Lambdin. "Unless by some miracle, someone comes in and says they have him covered, he'll come home with me."

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