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VOR Weekly E-Mail Update
August 15, 2008
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1. About this issue: Why Nonprofits MUST Lobby
2. Article: Why You MUST Lobby for Your Non-profit
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STATE NEWS
REACHING THE MEDIA SUCCESS
1. IOWA: Mother sees compassionate care at Glenwood (by Sybil
Finken, VOR First Vice President)
2. IOWA: More about Sybil - Glenwood citizen to serve as
national disability organization’s First VP
3. KENTUCKY: Oakwood ICF/MR - Reality better than perception
4. PENNSYLVANIA: 348 residents need Selinsgrove Center
5. PENNSYVLANIA: Mentally handicapped in Pa. await more help
COMING UP: More State News, including Oregon and California
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1. IOWA: Mother sees compassionate care at Glenwood
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About the Author: Sybil Finken is the First Vice President
of VOR, national advocacy organization for people with
developmental disabilities. Her son Seth is profoundly disabled
and resides at the Glenwood Resource Center. She is a veteran
music teacher for the Glenwood Public Schools. She and her
husband Russ reside with their daughter Carmen in Glenwood.
Mother sees compassionate care at Glenwood
Opinion Editorial by Sybil Finken, VOR First Vice President
August 2, 2008
Des Moines Register
I am the mother of four children.
Son Zach lives near Chicago where he is the Executive News
Editor of the Chicago Sun Times. Son Luke lives in Colorado
where, following in his parents' footsteps, he is an educator.
My youngest, Carmen, will be a junior in high school this fall.
She is an honor student, involved in many school and community
activities. Carmen is well poised for a very bright future.
Son Seth’s achievements are also remarkable. We’ve nurtured Seth
and continue to provide all we can to ensure his continued
happiness. Seth is severely disabled. He suffered meningitis
when he was 7 months old. Seth is deaf, blind, has profound
mental retardation, is wheelchair bound, and has a seizure
disorder. His home is Glenwood Resource Center (GRC.)
No one ever questions our decisions on behalf of Zach, Luke and
Carmen. My husband Russ and I are not shy about taking some
credit for the amazing people they have become. Yet, we are
increasingly challenged about our care choices for Seth,
especially in light of recent news stories about care at
Glenwood.
As a longtime national disability advocate, I'm familiar with
the question of whether institutions such as GRC are ever
appropriate. I frequently talk with parents and advocates for
the disabled in other states. And they have told me about the
terrible problems their loved ones face when facilities like GRC
are closed: long wait lists and seriously compromised care in
community settings. I have responded that Iowans are sensible
people. We know that a range of options is necessary. GRC isn't
for every disabled person. A person with mild mental retardation
who can take the bus to his/her job at HyVee can thrive and be
happy in a community setting. But Seth will never be like that.
GRC is the only place for him.
Common sense, however, doesn’t always carry the day and the
concerns I have heard from families in other states are suddenly
very close to home.
Advocates who trumpet the “one size fits all” approach to
disability services seem uncomfortably delighted by recent
headlines which call into question the quality of care at GRC.
These advocates are saying “I told you so” and calling for the
closure of Glenwood and (for good measure) Woodward Resource
Center, Iowa’s other specialized mental retardation facility.
These advocates – some of whom have never met me, Seth or
visited Glenwood – are also saying, indirectly, “I am a bad
mom.”
Yes, I am offended.
The headlines are scary and alarming, and families have
responded. We are the first in line to raise concern, get the
full story and call for improvements. Families are not blindly
supportive of Glenwood Resource Center. The protective reflex in
parents is like none other; it is only magnified when your loved
one is basically helpless and at the mercy of caregivers.
We support Glenwood Resource Center because we know Seth
receives compassionate, state of the art care by people who have
worked with him for years. We visit Seth regularly, dropping in
unannounced. If Seth were being harmed, we’d know it.
So what is the full story? Much of the concern relates to
paperwork, process and documentation. If, indeed, there are
needed changes to policies and procedures, then, yes, those
changes must be made. The state and federal oversight of
Glenwood – as opposed to the basically nonexistent oversight of
scattered community homes - gives parents like me so much
comfort. When people like my son are forced from a place where
their superlative treatment is examined with microscopic
intensity to a "free" environment in the "mainstream" community,
they are too often ignored and the quality of their lives
depreciates beyond belief. These failings don't often make
front-page headlines. But they are all too real.
We call on Glenwood’s administration and state officials to
improve its documentation and reporting, recognizing this can
only offer a degree of protection not available anywhere else.
Meanwhile, visit Glenwood Resource Center for yourself. I think
you will agree that the lack of paperwork is not worth closing a
remarkably compassionate home for Iowa’s most vulnerable
citizens.
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2. IOWA: More about Sybil -- Glenwood citizen to serve as
national disability organization’s First Vice President
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Glenwood Opinion Tribune
April 30, 2008
A local and national leader in disability advocacy has been
nominated to serve as First Vice President for the national
organization, VOR. Sybil Finken of Glenwood will begin her term
on July 1. Finken has served on the national organization’s
board of directors for since 2003.
VOR, which is celebrating its 25th anniversary in 2008, is
well-known for its advocacy in support of people with profound
developmental disabilities.
“Sybil has served VOR as an advocate and leader for many years,”
said Mary O’Riordan, Chairman of the VOR Nominating Committee
that selected Finken to serve as the organization’s next vice
president. “She’s known by her peers as a level-headed thinker
who is willing to roll up her sleeves to help get the job done.”
“She is very service oriented,” agrees Tamie Hopp, VOR’s
Director of Government Relations and Advocacy. “When VOR asks
its members contact their Members of Congress, Sybil is always
among the first – if not the very first – to report she’s
followed through.”
“This sort of ‘drop everything’ responsiveness contributes
significantly to VOR’s success as a grassroots organization,”
added Hopp.
Finken’s motivation for involvement is personal. Her son Seth,
age 29, suffered meningitis when he was just 7 months old. The
resulting disabilities were profound. He is deaf, blind, has
profound mental retardation, is wheel-chair bound, and has a
seizure disorder.
Yet, he’s content. “Seth has been blessed with receiving
compassionate state of the art care at Glenwood Resource Center
for much of his life,” says Finken.
Nationally, the trend has been away from large facility care for
people like Seth, favoring instead community-based care.
“There is a ‘big is bad’ philosophy around this country,” said
Finken. “Fortunately for Seth and his peers, Iowans are sensible
people. We recognize that people with developmental disabilities
are not all alike. There is a tremendous range of needs. People
should have choices to meet those needs.”
In Iowa, funding for community based long term care for people
with developmental disabilities is nearly equal to what is spent
to provide care at the two state facilities, and a smattering of
smaller licensed facilities throughout Iowa.
That’s the way it should be, says Finken. “For most people with
developmental disabilities community placement is most
appropriate – Iowa should be supporting people in the community
equally.”
It is the principle of choice that drew Finken to VOR several
years ago. VOR is known for its support of a full array of
residential services for people with developmental disabilities.
It carries out its mission by tracking and responding to trends
across the country that are threatening the facility option.
VOR is the only organization that supports families like the
Finkens, who feel strongly facility based care best meets their
family members’ intense and specialized needs.
“I credit VOR for the fact that we still have two facilities
with experienced staff providing compassionate support to more
than 500 Iowans with significant developmental disabilities,”
says Finken.
She bristles at the suggestion that Glenwood Resource Center is
somehow segregated.
“The Glenwood Community School District, serving school children
from pre-school through high school, shares the same campus as
Glenwood Resource Center. There is also a workforce development
center, a domestic violence shelter, offices for the Department
of Natural Resources Conservation and Forestry, a variety of
University training and research programs, and much more on the
Glenwood campus,” shares Finken.
“If that’s not integrated, I don’t know what is.”
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3. KENTUCKY: Oakwood ICF/MR - Reality better than perception
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By Chris Harris, CJ Staff Writer
Commonwealth Journal
August 11, 2008 08:48 am
Children running, laughing, playing. Big colorful
inflatables. People singing, dancing, having fun. It’s a joyous
scene, to be sure.
In fact, it was the scene at Oakwood Saturday — not a place with
a reputation for happy times, necessarily, but one where many
employees and family members of residents will tell you things
are much better than the public perception indicates.
“Family Day” has become a tradition at Oakwood over the year —
it’s been going on for a long time, but this is only the second
such event held under the leadership of the Bluegrass Mental
Health-Mental Retardation Board, which took over management of
the besieged mental health facility in November of 2006.
Gayle Rees, both a parent of an Oakwood client and
president-elect of the advocacy group P.R.O.O.F. (Parents and
Relatives Of Oakwood Facility), said that this is possibly the
largest event in terms of scale and number of fun attractions
offered — indeed, spread out across Oakwood’s lush green campus
was a sea of carnival game stands, umbrella-shaded tables,
inflatable slides and giant alligator-shaped structures that
brought to mind some place like King’s Island more than the
troubled Oakwood that makes the headlines.
Rees is clearly proud of what has been done at Oakwood over the
last two years, as Bluegrass inherited a facility teetering in
the brink of oblivion after a string of citations for incidents
of abuse and neglect. Under Bluegrass and CEO Joseph Toy,
Oakwood has virtually erased the problem trends while steering
the home for developmentally disabled residents back toward
Medicaid certification.
“If I was the Inspector General, I would approve this place,”
said Rees, referring to the need for an upcoming survey to
determine whether the facility will be able regain its federal
funding and thus retain its future.
Few people wouldn’t approve on a day like Saturday. With warm
weather and the smell of grilled food in the air to mix with the
sound of residents and family members belting out karaoke tunes,
smiles were plentiful on the faces of those in attendance.
Dr. Claude Farley of Lexington sat in the shade at a picnic
bench with several members of his family, including his son
Scott — a developmentally disabled resident of Oakwood. He found
inspiration in the day’s event, reminding him of “how much a
part of the human family we all are,” and was clearly enjoying
time with his son rather than feeling concern for his safety.
“It’s wonderful (home for Scott),” said Farley of Oakwood. “It
provides not only safety and security for him but the kind of
activity he can’t get at home. He has a job here that’s very
meaningful to him. He’s able to earn a little money, which makes
him proud and gives him a reason for being. They need a reason
to belong. Oakwood is now giving them that reason.”
Farley is impressed by the job done by Bluegrass since the
non-profit Lexington-based organization took over, doing away
with the state’s merit system employees, an employment loophole
which Bluegrass felt protected individuals who didn’t take the
safety and well-being of Oakwood’s residents to heart.
“It’s getting back to where it was originally — it’s an
organization that cares about the residents,” said Farley. “We
were down a long, lonely road there for a while, but (Bluegrass
has) done a marvelous job in bringing it back and making it
place we can be proud of.”
Dorothy Stevens knows that long and lonely road well — she has
been employed by Oakwood for 19 years. In that time, she has
seen a remarkable amount of growth and development, and hasn’t
seen much happier times than exist currently.
“We’ve undergone dramatic differences (in the last 19 years),”
said Stevens. “We used to take clients from their home and go to
the classroom for two-and-a-half hours a day. We had a mock room
that had shelves set up and empty cardboard containers and we
would sit in there letting them choose empty containers off the
shelf.
“Now we have a community living room where (the residents) can
do the cooking, they can go out and do the grocery shopping,
write down grocery lists, find out what value of money is,” she
continued. “You can see a major difference.”
Stevens said that the tone of her own voice was an indication of
progress — in 2006, under the previous management, you wouldn’t
have heard such enthusiasm, she noted.
“It’s much better under Bluegrass than it even was under the
state,” she said. “(It used to be that) you had to wait three
months to even get a stapler for the classroom. It’s a major
overhaul — staff morale is so much better.”
P.R.O.O.F. held an annual meeting in the Oakwood gym in the
midst of the festivities, which featured special words from
Somerset Mayor Eddie Girdler and key Kentucky lawmaker Sen.
Julie Denton.
Girdler said Oakwood is part of the Somerset “family” and
stressed the importance to this city of keeping the facility
viable.
“I have elevated Oakwood to same status as any department (or)
any activity in Somerset,” said the mayor. “The large
industries, the hospital — Oakwood will get the same attention.
We have started a number of contingency items to ensure that
Oakwood is successful, that it does remain open, and that we are
committed to the quality of life of every (individual) that
lives here.”
Denton, a Republican and chairperson of the state’s Health and
Welfare Committee, said she has been to a number of similar
family day events at other facilities and Oakwood’s ranks among
the very best. She expressed a desire to see the facility
succeed and encouraged anyone else concerned about Oakwood’s
future to contact her, whether they live in her district or not.
“It’s really just a village. This is not an institution ... the
staff is just fabulous,” she said. “ I think you have a lot of
support in the legislature. It’s so crucial for you to keep
lobbying your legislators.
“Whether it’s a community or a home, a facility or a village, I
think you have to all options open,” she added. “I do believe
that it’s the right thing to do.”
A large number of families were in attendance throughout the
course of the day, with the event lasting from the morning to
late afternoon. Most of the families are already familiar with
the campus, said facility director David Phelps, but are able to
see it in a whole new light under these conditions.
“We have some families here with as many as 15-20 family members
here for one person,” said Phelps. “That doesn’t happen on a
regular basis, except for ‘Family Day’.
“It looks like everyone is having wonderful time,” he added.
“People come up and say this (event) gets better every year. The
staff enjoying themselves, and the people live here are enjoying
themselves.”
In order for Oakwood to survive, the observation that the
residents are enjoying their time there cannot be emphasized
enough.
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4. PENNYSLVANIA: 348 residents need Selinsgrove Center
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Note: This article focuses on the excellent care received by
current residents of Selinsgrove Center. The article features
Bert and Leni Springstead’s son, Craig. Bert recently retired
from VOR’s Board of Directors after serving six years. Although
this article features the needs and preferences of current
Selingsgrove Center residents, the next article, which describes
the plight of 21,000 people in Pennsyvlania waiting for MR/DD
services begs the question just how many of these people would
benefit from Selingsgrove Center services.
By Amanda O'Rourke
The Daily Item
August 03, 2008 06:55 am
SELINSGROVE -- The Springsteads park their minivan out of
sight of their son, Craig, who upon seeing it becomes too
excited to get his work done.
"You happy?" Leni Springstead asks Craig as he crawls into the
back seat.
"Yeah," is his quiet reply.
It's a routine between this mother and her 49-year-old son, who
has lived at the Selinsgrove Center for nearly 30 years.
Craig, who is developmentally disabled, functions at the
mentality level of a 5-year-old, said his father, Bert. Craig
walks slowly, with a subtle tick of his right arm.
The Selinsgrove Center, now nearly 80 years old, exists to help
people like Craig, who call the sprawling 254-acre institution
home.
The closing of the Laurelton Center in 1998, the Western Center
of Canonsburg in 2000 and the Altoona Center in 2005 makes clear
the state's desire to reduce its reliance on institutional care
and improve access to home and community-based services for
Pennsylvanians living with mental retardation.
Yearly assessments have determined that the Selinsgrove Center
is meeting a need for Craig and the 347 other residents there,
state Department of Public Welfare press secretary Stacey
Witalec said. Therefore, operations continue at the Selinsgrove
Center with no plans to close.
Craig's living quarters at Selinsgrove are similar to a college
dormitory. In addition to furniture,
Craig's bedroom is outfitted with a flatscreen TV and mini
refrigerator, compliments of his parents. He has surrounded
himself with family photos, as well as photos of himself, like
the one of his standing in front of the ocean.
"I went to the beach last year," Craig said. "I swam in the
ocean."
Craig, the middle of the Springsteads' three children, also is
an avid collector of accessories -- rings, sunglasses and
watches. He has dozens, but he doesn't show them to just anyone.
Craig leads a very active life at the center and because of it,
his father said.
"He has a social life that's as good as mine ever was or
better," said Springstead, of Newville, Cumberland County.
Because of the center, Craig has had the opportunity to go to
the beach, county fairs, sporting events, dances, even ride a
helicopter.
A typical day has him rising for breakfast and then heading off
to work at the center's recycling center.
"We sit around and watch TV, put garbage out and we mop the
floors here," Craig said of his household activities. "That's
it."
Center began as colony for epileptics
The Selinsgrove Center of today and the Selinsgrove Center of
yesterday are two very different places, documented in a single
hallway in the institution's central building.
Behind glass showcases, hand-written ledgers dating to the early
part of the 20th century put names to the institution's first
function, which was as a colony for epileptics.
In cursive writing the names are entered, along with arrival
dates, followed by death dates and causes, many listed as
seizure or pneumonia. The development of penicillin in the 1940s
is obvious in the book; the death rate plummets.
Farther down the hallway, the photos begin.
In one black-and-white shot, dozens of babies lie strewn about
the floor, two, maybe three nurses watch over the lot of them. A
subsequent photo reveals the cost of the time they spent in
recline as infants -- flattened heads.
"We do this to remember how far we've come," said Ellen Wagner,
program project director at the Office of Development Programs.
It's not a past the center or its employees are ashamed of.
Though the public's perceptions of institutional living have
changed over the decades, the fact is the Selinsgrove Center,
first known as the Selinsgrove State Colony for Epileptics, was
considered state of the art in the 1940s and 1950s, years during
which the center saw many of its admissions, its high-tide
population reaching 2,141 residents in 1964.
"It probably wasn't the most pleasing environment to live in,"
interim facility director Fred Lokuta admits.
When the center opened in 1929, 180 epileptics -- all men --
lived there in three buildings. As part of their treatment, they
farmed the center's property, more than 1,300 acres at the time.
They were not paid for their work.
"The ideal country setting, the peace and quiet and the rest --
that was all part of the treatment at that time," Wagner said.
Remaining centers won't close, official says
It wasn't until the 1940s that women and children were
admitted. The increased population led to expansion. In the
1950s a law was passed that made the Selinsgrove State Colony
for Epileptics a facility for the study, care, treatment,
education and training for the mentally retarded and the name of
the facility was changed to the Selinsgrove State School and
Hospital.
In the 1970s, the state began an initiative that continues today
to place residents of its state centers into community group
homes, leading to a slow decrease in population.
"We look forward to be able to afford a community option to them
when it's appropriate," said Witalec, the Department of Public
Welfare press secretary. "It's our hope that we can help people
continue to move into the community if that's what they wish to
do and many of them, they want to be able to live at home or in
a home-like setting."
It could stand to reason that the state's push to move its
mentally retarded clients into community settings would
eventually lead to the closure of all state centers like
Selinsgrove, but Witalec was adamant that will not happen.
"I think there will always be that level of need," Witalec said.
"There will always be some individuals who have such a unique
situation or a high level of care that's needed that it may not
be appropriate for them to move into the community. There will
always be a need."
Today the center cares for 348 residents, all older than 22,
with an average resident age of 58. As its residents age, Lokuta
said, the center must consider their changing needs, which
include Alzheimer's care and care for advancing physical
disabilities.
Nearly 900 employees provide medical and mental health care,
physical and speech therapy, nutritional care and pastoral
services. A vocational department provides work opportunities to
center residents.
Father: Center provides needed care
Springstead said he believes that the level of care provided
at the Selinsgrove Center is one his son will always need, and
prefers his son not be moved into a group home, believing it
would actually limit Craig's freedom.
"He's had pretty free reins at this place," Springstead said. At
another place, "He'd have someone hovering over him. Craig
doesn't want to be hovered over. Nor do I."
Being the father of a developmentally disabled child is a life
of ups and downs, Springstead said, from the frustration of
getting Craig placed into a facility that could address his
needs to the guilt, however unreasonable, of having a son who
has special needs to begin with.
Springstead, a retired Army man, never realized the full
potential of a career in the military.
There will be no retirement to Florida for him and Leni
Springstead.
"It kind of keeps your foot nailed to the floor," Springstead
said.
"But I wouldn't pull my foot loose from the floor if I could. I
won't leave him."
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5. PENNSYLVANIA: Mentally handicapped in Pa. await more help
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Summary: More than 21,000 Pennsylvanians were awaiting services
through the mental retardation system as of June.
By Craig Smith
Pittsburg Tribune-Review
Monday, August 11, 2008
Lisa and Doug Kosanovich hope a Pittsburgh charity can do
for their daughter what the state can't.
They're seeking $5,000 from Variety, the Children's Charity, to
help cover the cost of building a wheelchair ramp for Lainey,
13, who is mentally retarded and has a disease that's causing
her hip to crumble.
"It's frustrating. There's a huge paper trail, but then you
don't get anywhere," said Lisa Kosanovich, 40, of Daugherty in
Beaver County.
Lainey Kosanovich is one of the more than 21,000 Pennsylvanians
on a waiting list for services, including more than 4,500 who
were classified as having "emergency" needs and more than 9,500
listed as having "critical" needs.
She has been on the emergency waiting list for five years.
State money could be used to build the ramp, administrators
said. But in the days of tight budgets, it often comes down to
choosing among emergencies.
"So many people have emergencies, but what's the worst
emergency? There's money, but there's not enough of it," said
Nancy Murray, president of The Arc of Greater Pittsburgh.
The Arc of Pennsylvania said the state's new budget fails to
adequately address the needs of those with intellectual
disabilities. Although the budget includes a previously planned
1 percent "cost-of-living" increase -- which officials said
doesn't cover inflation -- the state also calls for a 1.3
percent spending reduction.
"This is not a good way to run a railroad," said Steve Suroviec,
executive director of the state organization.
WHAT WILL BECOME OF THEM?
Helen Waite, 75, of Irwin has different concerns for her
mentally retarded son. She worries how he'll manage when she no
longer can care for him.
Waite would like to see her son, Harry, 46, live with a roommate
and a full-time caregiver, but she knows there's no money for
that in the mental retardation system. Still, she holds out
hope.
"Our needs right now are covered. But I know the time is coming
when he is going to need help," said Waite, whose husband,
Raymond, 79, has Parkinson's disease.
More aging parents are losing the ability to care for adult
children, mental retardation program officials said. Some
mentally retarded people aren't attending day programs because
they are staying home to care for aging parents.
The money shortfall makes it difficult to move people off the
waiting list, said officials of the mental retardation system,
which receives money from two primary sources -- the federal and
state governments through the Medicaid program.
Pennsylvania moved 3,500 people off its waiting list in 2007 and
planned to help 1,800 on the list this year. The Department of
Public Welfare said the reduction in the approved state budget
likely will reduce that number.
The kind of care Helen Waite hopes for could cost more than
$70,000 a year, depending on an individual's needs and the state
where they live, according to the National Organization to End
the Waitlists.
SYSTEM IN DISARRAY
"We tend to be treading water. The system has never been
able to support everybody who is in need," said Donald Clark,
deputy director of the Allegheny County Office of Mental
Retardation and Developmental Disabilities.
It's a national trend.
"There are problems all around the country," said Peter V. Berns,
executive director of The Arc of the U.S.
The New Freedom Commission on Mental Health reported to
President Bush in 2003 that the mental health system was in
disarray, with unmet needs and many barriers to people needing
services.
The Arc of the U.S. has started a "Stop The Wait" campaign to
draw attention to the growing numbers on waiting lists. More
than 285,000 people on waiting lists in 21 states are included
in the campaign's database. About 716,000 people might be living
with a caregiver who is 60 or older, Berns said.
"Something's got to give, sometime," said Deborah Neifert,
deputy director of the Mental Health/Mental Retardation
Administrators Association of Pennsylvania, which has called the
mental retardation system in the state "unstable."
The system evolved from one focused on providing services in
large institutions to one based on providing services in or near
the home and community. In 1966, more than 13,000 people lived
in state-funded institutions. Just 1,300 people live in state
institutions today.
A recent study by the Joint State Government Commission of the
General Assembly made five recommendations to improve
Pennsylvania's mental retardation system. Among them: making the
elimination of the waiting list a priority; dedicating funding
to ensure services for mentally retarded students to transition
to adult life; and establishing consistent annual funding
increases.
Those recommendations, if instituted, won't address people who
need services but are not registered with any agency. There is
no official estimate of the number of people on what mental
health officials call the "shadow list."
"Some have said it could be double the waiting list," Suroviec
said.
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Tamie Hopp
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Tamie Hopp
REFERRAL/MEMBERSHIP/CONTRIBUTION FORM
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TO REFER SOMEONE TO VOR: Use the form below, including the
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Mail the completed form (if joining or contributing) with
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