Healthcare: For Virginians with disabilities, waiting list grows faster than aid
For 4,000 hopefuls, there are 600 new slots
By Elizabeth Simpson, April 8, 2008, The Virginian-Pilot
Brandon Christie finished high school three years ago, so like most people at that stage he’s ready to leave home.
Here’s the holdup:
The Virginia Beach 24-year-old has cerebral palsy, which limits him mentally and physically. He has seizures, requiring him to take four medications and to have around-the-clock supervision.
The General Assembly this session provided funding for an additional 600 people with mental disabilities like Christie to live more independently in the community.
That may sound like a lot, but in Virginia Beach, which will receive 27 of those slots, Christie is one of about 270 people on a waiting list. At least 99 are ahead of him.
Families and advocates for people with disabilities are grateful for the 600 slots – called Medicaid waivers – particularly since Gov. Timothy M. Kaine first proposed funding only 150 new slots over two years.
But the need continues to grow faster than the number of slots. Every year, another group of students with disabilities leaves high school – 30 to 40 in Virginia Beach alone – and that keeps adding to the list.
At the same time, people in state hospitals and nursing homes are using the waivers to move into community settings.
“It’s like they’re never going to be able to catch up,” said Ann Christie, Brandon Christie’s mother. “We just don’t see an end to it. We know people who have been on the list 10 years.”
The 600 slots that become available on July 1 will go quickly in a state where 4,000 people, 900 of them in Hampton Roads, are on the waiting list.
A state-generated report to the General Assembly estimates that 580 new people are given priority on the waiting list every year. At that rate, it would take 800 slots a year for eight years to cut the list to a manageable level, the report said.
In some budget years, legislators provide an infusion of money, as in 2004, when $50 million was allocated for 1,000 new slots. In other years, the funding falls off.
The Medicaid waiver was established by Virginia in 1991 to shift people from institutional care to community care. The idea was to use Medicaid money, which is a combination of state and federal dollars, for care in the community rather than in institutions and nursing homes.
However, a larger percentage of this generation’s people who are disabled have been cared for at home rather than in institutions, and when they leave the school system at 21, their parents are left trying to fill the gap.
Both of Brandon Christie’s parents work, and they’ve had to juggle their schedules to care for him.
Brandon works six hours a week at Walgreens. And he attends a Cerebral Palsy of Virginia day program twice a week for six hours a day, which costs $250 a month.
A Medicaid waiver would allow him to move into a group home and receive services that could provide more socialization and job skills. Ann Christie says her son is eager to move out on his own, and she’s worried he’ll lose some of his skills if he spends too much time at home.
“I’m ready to move away,” Brandon Christie said. “I’m ready for an apartment.”
The waiting list, though, is divided into two groups, urgent and non-urgent.
Those on the urgent list have parents or other caregivers who are getting too old or sick to care for them. The urgent list also includes people “aging out” of residential facilities for children or other places providing care.
Because that list is continually changing, it’s hard for people on the non-urgent list – like Brandon Christie – to know where they stand.
Jay Lazier, who directs mental retardation services for the Virginia Beach Department of Human Services, said case managers there will be prioritizing their lists during the next few months to see who is most in need.
Maureen Hollowell, director of advocacy and services at the Endependence Center, which helps people with disabilities, said some types of disabilities didn’t get any increase in slots.
A Medicaid waiver that was established in 2001 for people with developmental disabilities, such as autism and brain injuries, got no new slots during this budget session. About 600 people in the state are on the waiting list for this kind of waiver.
“It’s frustrating and perplexing because there’s no rhyme or reason to it,” Hollowell said. “Just because their disability is different, their needs have been set aside.”
Samantha Gregg of Virginia Beach has an 11-year-old son, David, who is autistic. He’s been on the waiting list for the developmental disability waiver for five years. The single mother of three wants to use the money to sign her son up for special therapy and to hire people to help care for him, which can be an around-the-clock endeavor.
Without new slots, people on the list must wait until someone with a waiver no longer needs it because he or she has moved out of state or into an institution or has died.
Another source for independent-living money will become available this summer, but it’s geared toward residents of longterm care facilities.
Virginia is one of 31 states participating in a “Money Follows the Person” project, which starting July 1 will help people move from long-term-care institutions back into community settings. It’s expected that $28 million in federal Medicaid dollars will help deinstitutionalize about 1,000 elderly people and people who are disabled over the next several years.
The project also aims to build a better network of community services for people with disabilities.
Children with disabilities whose families care for them at home, however, would not be eligible, leaving them to wait for more Medicaid waiver slots.
“I keep thinking his number is going to come up, but year after year goes by and it doesn’t,” Gregg said. “It’s been draining financially and emotionally.”
Brandon Christie, who has cerebral palsy, is one of about 270 people in Virginia Beach on a waiting list for a Medicaid waiver intended to help people with mental disabilities live more independently.
Brandon Christie uses a walker to make his way through the home he shares with his parents. Christie attends a Cerebral Palsy of Virginia day program twice a week for six hours a day, which costs $250 a month.
Brandon Christie, 24, makes his bed with his mother, Ann, at their home in Virginia Beach. Both of his parents work and they’ve had to juggle their schedules to care for him. Brandon works six hours a week at Walgreens.
Medicaid waivers for people with mental disabilities
Medicaid waivers provide a combination of state and federal money to help people with mental disabilities live in family homes, group homes or other community settings rather than institutions. In its last session, Virginia’s General Assembly approved funding for 600 new Medicaid waivers for people with mental disabilities statewide – 112 of which will be slotted to Hampton Roads where there are 395 people on the urgent waiting list.
Chart categories: Urgent waiting list - People on the urgent waiting list include those with parents or caregivers who are elderly or too sick to care for them. It also includes those who are “aging out” of children’s residential facilities. Non-urgent waiting list - People on this list would be served after those on the urgent list receive waivers. New Medicaid waivers - Number of new waivers to be distributed in Hampton Roads cities.
Take Action!
February 5, 2008
Your help is needed...
It’s time to get rid of the “R” word in Virginia Code (state law)!
Ask your Delegate and Senator to support HB760/SB620!
Self-advocates across the Commonwealth have given our General Assembly a very important charge this 2008 session-get rid of the word "retarded" in Virginia's state code!
HB760, patroned by Delegate Caputo and SB 620, patroned by Senator Ticer and Senator Howell would replace references in the state code of "mentally retarded" and "mental retardation" to "intellectual disability" - even changing the name of the Department of Mental Health, Mental Retardation and Substance Abuse Services to the Department on Mental Health, ntellectual Disability and Substance Abuse Services!
HB760 and SB620 have been enthusiastically embraced and supported by self-advocates across the state who feel it is a welcome change that is long overdue. Over the past four weeks, people with intellectual disabilities from all over the Commonwealth have been "walking the halls" of the General Assembly building - sharing their personal perspectives with legislators on how being called "the R word" has made them feel and why the change is needed.
No matter who you are - a self-advocate, family member, professional, or concerned citizen - it is important that members of the General Assembly hear from YOU that this is an important step for Virginia to make in assuring dignity and respect of people with intellectual disabilities!
Learn more about HB760/SB620:
Where are the bills now?
- In the Senate: SB620 is in the Senate Courts of Justice Committee to examine how it affects parts of criminal law that reference the terms "mental retardation." We have just learned that the bill will be heard on Monday morning so please be sure to send an additional email to members of this Committee, click here to so.
- In the House of Delegates: HB760 is in the House Appropriations Subcommittee on Health and Human Resources. This bill is also likely to be heard in Committee within the next week. To contact members of the House Appropriations Subcommittee to ask for their support - click here.
- Track the HB760/SB620 with The Arc... Visit Legislative Information Systems to see how the bill is doing, http://leg1.state.va.us/cgi-bin/legp504.exe?081+men+BIL. Enter "HB760" or "SB620" in the search box at the top of the page. This will show you where the bill is at in the legislative process, as well the number of votes the bill received in committee.
Thank you for taking action! In the words of Jill Egle and Erin Thompson, two self-advocates who work for The Arc of Northern Virginia that testified before the House Health, Welfare and Institutions Committee and the Senate Education and Health Committee this session (obtaining unanimous votes in each)-" Virginia is not retarded anymore!!"
Hope House raises money on the runway
By Amy Coute, The Virginian-Pilot, November 26th, 2007
Sometimes fundraising requires creativity and a few surprises.
"I can't wait to see what they come up with," Elena Berry of the Hope House Foundation said, as hairstylists flittered around, gluing longer lashes on tattooed models and covering the scantily clad in glitter.
Each year, South Hampton Roads residents gather to raise money for the foundation, an organization that supports adults with developmental disabilities. This year the fundraising, on Sunday in Ghent, began with a hair and makeup fashion show at Toques followed by the Food, Fashion and Fun event at The New Belmont.
Hope House, which helps adults with developmental disabilities live independently, has 125 clients and needs about $250,000. Money raised will subsidize dental bills and rents and buy clothing, food and extras that clients can't afford.
"Hope House is not a sexy charity," Berry said.
In order to bring people's attention to the group and garner the kind of support the agency relies on, she said, fundraisers have to be unique.
"Things like this that are different and edgy help us get the word out in a creative way," Berry said.
For more than six hours, 13 of the 35 stylists from Changes Hairstyling, City Spa and Jake's Place cut, textured, colored and shaped hair.
"We're trying to keep all our models very earthy, very angelic, " said senior stylist Gil Trautman as he finished off the makeup for Amanda Hill, 21.
"When we're done, she's going to be very hot."
Each stylist chose their own models and theme in September when the salons began planning the show.
Clouds of hair spray filled the salon. From the mist, ladies emerged as glamorous pinups and the men came out stylishly gelled, spiked and colored.
"We want everyone to know we're not just an everyday salon," said Ashley Hebert, Changes ' talent director. She hoped the show would raise several thousand dollars for Hope House.
At the salon's first showcase in the spring, stylists raised about $1,500. This year, about 100 people attended the hair and makeup show, and they raised about $1,200.
"W e just wanted to help out Hope House and just raise some money," said Hill of Chesapeake. "It's just to have a good time and to put a wow face on everyone."
With Prince, Mariah Carey and others blaring from speakers, models showcasing a geisha updo with flowers, a red-and-white peppermint swirl of hair and punk rocker hairstyles all floated down the white spiral staircase of Toques.
Applause greeted each.
"We look at this as changing looks and changing lives," Berry said. "It just seems like it is a great integration."
Megan Moniot, who was styled as a "peppermint girl" by Shannon Flowers, waits to make her entrance during a hair and makeup show for Hope House Foundation on Sunday.
St. Mary's grad will trade children's home for brother's apartment
By Elizabeth Simpson, The Virginian-Pilot, May 25th, 2007
NORFOLK - A milestone moment for Adam Wright arrived Thursday with all the usual elements of graduation ceremonies - silky blue robes, the strains of "Pomp and Circumstance," the flash of cameras.
The backdrop was a little different, though, in that the 20-year-old Norfolk man and four others graduated from St. Mary's Home for Disabled Children.
Once residents turn 21, they are no longer allowed to live at the children's facility on Kempsville Circle, and usually move on to group homes, state institutions or other long-term-care facilities.
For Adam, who has cerebral palsy, the transition means he'll be reunited with his 25-year-old brother.
Nicholas Wright also has cerebral palsy.
The two brothers will share an apartment supervised by Hope House, an organization that supports people with disabilities in their own apartments or homes.
Pam and Phil Wright kept both of their children home until they were 9 and 13, when they were so big it was difficult for the parents to care for them. The two brothers moved into St. Mary's, where they shared a room. Five years later, Nicholas was able to get government funding, in the form of a Medicaid waiver, to live in the community instead of an institution.
He lived at home for a while, and two years ago, moved into a Norfolk apartment run by Hope House. Adam also recently qualified for a Medicaid waiver. In years past, graduates were more likely to move into state institutions or nursing homes, but there's been a movement
across the country toward more independent living, such as apartments with supportive help or group homes.
Lee Price, who gave Thursday's commencement address, directs mental retardation services for the Virginia Department of Mental Health, Mental Retardation and Substance Abuse Services. He said 7,300 people across the state have Medicaid waivers to live independently in the community.
That's an increase from about 800 people 15 years ago.
The transition from a facility to the community brings more independence, but it can also be hard, considering that the average length of stay for St. Mary's residents is 14 years. Some have been there since they were babies.
Each graduate's photos were flashed on the wall during the ceremony, from baby photos through the teen years and early adulthood.
Teachers and caregivers "oohed" and "ahhed" at the photos and talked about each graduate. One loved the song "Who Let the Dogs Out." Another liked colorful pictures. For another, the word, "Pepsi," always brought a smile and a request for a can of the soda.
Adam loves NASCAR racing and laughing with his brother.
His parents continue to talk with him about his upcoming move to an apartment.
"He still has a hesitation about leaving," Pam said. "It's such a big change for him. This has been his family."
But Pam and Phil are relieved he'll have a brother in the same apartment. With two years under his belt, Nicholas has settled into apartment living. He knows his neighbors, and he's comfortable with Hope House staff members. That should ease the way for Adam.
"One makes the other laugh," Pam Wright said. "They enjoy one another's company."
Lynne Seagle, Inside Business’ 2006 Women in Business Achievement Award Recipient
By Megan Zirkle, Inside Business, January 25th, 2007
When Lynne Seagle was hired in college to live in a group home where adults with developmental disabilities shared a house, she found her career path in life.
For the past 24 years, Seagle has been the Executive Director of the Hope House Foundation in Norfolk. She oversees agency management, fiscal supervision, support services, staff training, fund raising, but most importantly - helping those with disabilities to live independently.
Seagle's greatest professional achievement in more than two decades of service was in 1983, when she led the agency to move adults with disabilities out of group homes into separate living spaces. At the time, there were 12 group homes among the four cities of Virginia Beach, Portsmouth, Chesapeake and Norfolk.
"Just because people have a common label, doesn't mean they're compatible to live together," Seagle said. "We realized it wasn't working and then the biggest step was admitting it."
Over a 12-year time span, Seagle was a leader in moving 130 adults with disabilities out of a group home into a place they could call their own. She admits that the process was difficult at times and described it as "lonely."
"We were doing something that had never been done before," she said.
For her outstanding efforts, Seagle received the Joseph P. Kennedy Jr. Foundation's International Future Leaders Award in 1995. This prestigious award was also given to Mother Teresa and B.F. Skinner.
Seagle's contributions to adults with disabilities have also been recognized internationally. She has been to England, Scotland, Ireland, and Japan as a consultant providing assistance and training. Almost every other month, Seagle works overseas in the United Kingdom providing support and services to agencies caring for those with disabilities.
In 2000, Seagle started the first capital campaign, which provides affordable housing for individuals supported by Hope House. The campaign ended in 2002, with more than $1 million raised. The money allowed Hope House to purchase eight apartment buildings for those supported by the agency and for low-income residents as well.
"I thought initially that it wouldn't take this long to change the world," she said, adding, "It's ongoing to me and there isn't necessarily an ending point."
|
