Sarah Brubaker is among the lucky ones.
The 4-year-old receives financial
assistance for the numerous expenses related to her multiple
disabilities while about 4,000 Virginia children and young adults remain
on a state mental-retardation waiver waiting list.
"She has in-home nursing care,"
Sarah's mother, Janice Brubaker said. "If that care is taken away, one
of us isn't going to be able to work, and we'll lose everything."
Sarah and her parents joined about 500 others in downtown Richmond
yesterday for a march to tout the need for more services for Virginians
with mental retardation.
The
Arc March for Awareness, Commitment and Resources began at Mayo Island
on 14th Street and ended at the state Capitol.
Supporters from across the state
gathered to lament Virginia's national ranking of 14th among states in
per capita income and 47th among states in resources for people with
mental retardation.
Though 23,000 Virginia families
receive support, at least 1,000 individuals remain on an urgent-care
waiting list, including 3-year-old Sean Carey. The severely disabled
Chesterfield County boy's parents must foot the bills themselves for his
feeding tube and other daily needs.
"There are so many families who have
waited and waited and waited," said Teja Stokes, executive director of
The Arc of Virginia, a state-advocacy organization for people with
mental retardation and related developmental disabilities and the
sponsor of yesterday's march. "It's time for Virginia to meet the needs
of her most vulnerable citizens."
Those needs range from financial
assistance for daily care to programs that offer support and guidance
when a person leaves the public school system's special-education
program at age 21.
"Neil is 18 and will be in school
another three years. After that, there's nothing set up for him," said
Dr. Harry Gewanter, a local pediatrician and advocate for the disabled
who marched yesterday with his daughter and his son, Neil, who has Down
syndrome and is hearing impaired. "He's as much a citizen and [resident]
of the U.S. as everyone else."
Sen. Stephen H. Martin,
R-Chesterfield, who greeted marchers before they took off from Mayo
Island, applauded them for "asking for everything they need."
"You'll always have waiting lists,"
Martin said, "But we can stabilize the funding with some responsible
decision-making and make sure we have 150 to 180 new slots [for
mental-retardation waivers] per year."
Many
marchers said they'll take all they can get.
Mary Grace Holloway's parents
recently purchased a handicapped accessible van that costs, they say, as
much as a Mercedes. The 3-year-old Beaverdam girl's family has waited
for about a year for help with the costs of managing her condition, Rett
syndrome, and have been told they're at least a year away from obtaining
services.
"It's sad to say that we don't want
her to outlive us, because we're afraid of what will happen when we're
gone," said Hamilton Holloway, Mary Grace's father.
Contact Stacy Hawkins Adams at (804) 649-6578 or
sadams@timesdispatch.com
_________________________________________________________
Headline: "Isabel hinders, but does not stop a
march on Capitol Square"
Hugh Lessig and Terry Scanlon
September 21 2003
Mental health advocates from throughout Hampton Roads had planned to be
in Richmond on Saturday.
They were set to join people from across the state to march on the state
capitol. The mission: Call attention to skimpy funding for programs that
help mentally retarded people, and put the General Assembly on notice in
2004.
It would have taken, oh, one of the worst hurricanes in a generation to
keep them away.
That probably explains why officials from The Arc of Virginia, who
dreamt of drawing 5,000 people to Richmond on Saturday, ended up with
about 700 instead.
Still, they made their point.
Starting at Mayo Island, the line of marchers stretched several blocks
through downtown Richmond, where some traffic signals actually worked.
They marched up Ninth Street, some pushing wheelchairs and strollers,
some walking arm in arm under the hot noonday sun with their kids.
They eventually reached the grounds of Capitol Square, which was swathed
in yellow tape and dotted with uprooted trees from Hurricane Isabel.
Gov. Mark R. Warner wasn't home. As luck would have it, he was on the
Peninsula, touring hurricane-damaged Poquoson.
What he would have heard - and what he knows anyway - is that Virginia's
fiscal crisis has squeezed funding for a variety of programs, including
one that allows mentally retarded people to receive care in the
community instead of staying in an institution.
Funded by Medicaid, it's known as the MR Waiver.
Teja Stokes, executive director of The Arc of Virginia, said funding for
the MR Waiver is only one of several programs that need money. Across
Virginia, nearly 1,000 people are on the urgent waiting list for MR
Waiver services.
Who is considered an urgent case? It might be an 80-year-old mother
caring for her 40-year-old mentally retarded daughter. Let's say the
mother has heart problems or can't walk well. That family is one step
away from a major crisis, because when mom falls down the stairs or has
a heart attack, the daughter is in trouble, too.
The Arc wants the state to fund additional slots for the waiver, so the
waiting list goes down. It also wants a rate increase for day programs,
group homes, residential services and other programs that provide help
for people who use the waiver.
Money for people and kids with developmental disabilities is another
priority. Developmental disabilities could be cerebral palsy, spina
bifida or autism.
All compelling issues, to be sure.
But two days after a hurricane, with federal and state bigwigs touring
the state with major media in tow, their chance of scoring a Wolf
Blitzer interview on CNN wasn't so hot.
No matter. The way Howard Cullum sees it, fortunes won't rise or fall on
what happened Saturday. Cullum is the former executive director of the
Hampton-Newport News Community Services Board, a former cabinet
secretary, and a statewide leader in the mental health community.
"A few months from now," he told the crowd, "people will forget that we
even had a hurricane, unless they had personal loss to themselves or
their family. But our issues will still be here." "Advocacy," he said,
"doesn't end with a march to Richmond."
Del. Ken Plum, a Democrat from Northern Virginia, also addressed the
troops.
"It is a tough agenda next session, no question about it," he said
afterwards. "But we can only deal with issues to the degree that we have
them all on the table." Plum said there is "a tendency on the part of
some people to want to sweep things under the rug - not pay attention to
them. The importance of what these people are doing today is raising
that awareness so when we're talking about priorities, this gets on the
list."
The date of the march was cut in stone some time ago, and apart from
Isabel lousing up everyone's week, the timing made sense. It's early in
the fall campaign season and Warner is still preparing his executive
budget.
An official from the Department of Health and Human Resources thanked
the marchers for coming on behalf of the Warner administration.
Back in the crowd, someone was heard to mutter: "Say it with a check."
Maybe Isabel was a Republican.
As we mentioned, Capitol Square took a beating from Hurricane Isabel. A
few stately trees were toppled, and the place was littered with debris,
all the way from the Edgar Allan Poe statue to the deserted Finance
Building.
Isabel showed no respect for the state's top Democrat, either, as one of
the larger trees fell at the Executive Mansion, just missing the
guardhouse.
After a press briefing last week, Gov. Mark R. Warner said he and his
family were none the worse for weathering the storm. However one of
Warner's young daughters ended up sleeping in a different room because
the storm was lashing the house so hard. Dad didn't get much sleep,
either.
Hugh Lessig can be reached at (804) 225-7345 or by e-mail at
hlessig@dailypress.com.
Terry Scanlon can be reached at
247-7821 or by e-mail at
tscanlon@dailypress.com.
Copyright ©
2003,
Daily Press
