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Plan to Join Us!! VOR 2006 Annual Meeting and Washington Initiative. See -
http://vor.net/AnnualMeeting2006.html for complete details, including a
registration form.
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VOR is the only national organization advocating for a full range of
residential and support options for people with mental retardation,
including Medicaid-certified Intermediate Care Facilities for the Mentally
Retarded (ICFs/MR) and home and community-based care. VOR
supports choice.
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VOR Weekly E-Mail Update
March 17, 2006
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1. VIRGINIA: Training & Advocacy: A Parent's Perspective Virginia
Training Centers
2. MASSACHUSETTS: Guardians unhappy with arrangements
3. SOUTH CAROLINA: Bill calls for state agency to investigate abuse of
disabled
4. MISSOURI: Bill calls for higher community care standards
5. FLORIDA: Working on a Dream - Service Agency Chief and Father Envisions
A Community for Handicapped Residents
6. MEMBERSHIP, CONTRIBUTION AND REGISTRATION FORM (see also
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1. VIRGINIA: Training & Advocacy: A Parent's Perspective Virginia
Training Centers
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by Jane Anthony
March 2006
Reprinted with permission of "Celebrating Special Children, A Resource
Guide for Families of Children with Special Needs in the Commonwealth of
Virginia"
I am thankful that my son Jason found a placement at Northern Virginia
Training Center (NVTC) 26 years ago when Training Centers (TCs) still
accepted children and the State more readily provided life-long supports;
and I hope TC placement will be a viable alternative for others like Jason
for many years to come.
Although 30 years-old, Jason functions at the level of a 6 to 8 month-old,
has no verbal skills for expressing his own needs or desires, tends to be
passive, and depends upon others for stimulation and encouragement to
participate in life's activities. He needs the stable, safe, loving care
and staff continuity provided by NVTC. It is truly his home and least
restrictive environment, providing frequent contact with other families and
many community volunteers, large safe spaces to encourage movement, diverse
activities and stimulation, as well as many special activities and outings.
Active parent groups at TCs offer assistance and camaraderie, and enrich
the TC environment for the residents. Jason now "works" at Central Fairfax
Services' (CFS's) assistive work program, but when he was younger, he
attended school at the Kilmer Center. All of these experiences and
environments have stretched Jason as a person and enabled him to connect
with the community to his full potential.
Because TCs are under many layers of administrative oversight with multiple
staff on duty and random visits from family and visitors, I know he is safe
and well cared for. This is critical because he is an ideal target for
abuse and at risk to environmental hazards because he will chew or eat
dangerous objects if permitted (pica), has a very high pain threshold, can
walk, has the strength of a ten year-old, but no comprehension of the risks
or consequences presented by the typical home environment.
For Jason and others who are the most disabled, medically fragile, and/or
behaviorally challenged, TC staff have the specialized skills and
experience to creatively address each resident's unique needs. For example,
the specialists at NVTC have controlled Jason's seizures with a minimum of
interference with his ability to enjoy life; anticipated and corrected
skeletal problems with both surgery and physical therapy, enabling him to
remain mobile and minimize fractures; and trained Jason to feed himself.
The Regional Community Support Center (RCSC) program extends the
specialized skills and treatment facilities available at TCs to those in
the community. The RCSCs provide, for example, medical and dental
outpatient consults and treatment, respite, training for community staff,
and specialized educational opportunities for students in cooperation with
area universities. Those in this most disabled population often require
full anesthesia for periodic cleanings illustrating one of the many
essential specialized skills.
Today, parents of children with profound mental retardation with behavioral
and medical complications face a difficult situation: more applicants
competing for the state supports being offered, a fragmented system of
supports, and no one place for parents to learn about their options. To
complicate matters, many years of under-funding for both TCs and
"community" waiver programs have created a crisis.
Governor Warner and Dr. James Reinhard, Commissioner of the Department of
Mental Health, Mental Retardation, Substance Abuse Services (DMHMRSAS) have
proposed an innovative restructuring plan to modernize TCs that involves
moving TC residents who would benefit from community placements into waiver
slots. However, because those in today's TC population present comparable
costs to support in the community, the restructuring plan will not address
the underlying problem: community supports are woefully under-funded. In
Virginia, families must reach a crisis before they qualify for any
placement.
According to the University of Colorado's national rankings, Virginia is
11th in the nation with regard to its ability to pay for services. However,
it ranks 28th out of the 50 states and the District of Columbia on TC
spending and an outrageous 47th in funding for community supports. Although
Virginia's TCs may appear well supported by comparison, expenditure per
resident ranks 41st in the country. While the public school system must
provide supports up to the age of 22, I urge parents of children with
severe mental and associated disabilities to begin considering the options
available after age 22 well before their child needs such options. It's
also critical to strongly advocate for increases in public supports that
are so desperately needed. Modernized TCs play an essential role in an
integrated system of supports, and parents whose children qualify should
consider what they have to offer.
Governor Warner demonstrated his recognition of the essential role that TCs
play in a continuum of supports for those with MR when he drafted his
restructuring plan for MR services. Years of delayed maintenance and
facility modernization as well as changes in standards of safety and care
precipitated the need for restructuring. Newer buildings will better serve
current residents, who are much more disabled than those for whom TCs were
originally built, and operating efficiencies of new buildings will greatly
offset capital costs. Also, RCSC supports will be expanded to all five TCs,
and those who can transfer to the community will have that option. Thus,
restructuring should better integrate the system of services.
Because geography does matter, the clustering of specialized skills and
equipment with those who have the most involved needs onto a TC campus
reduces travel risk, staff time, and cost. Co-location of services on a TC
campus creates the opportunity for several specialists to consult with one
another and create better supports, and an aggregated staff provides
greater flexibility and efficiency. The RCSCs affiliated with the TCs are
an effective support system for those who can schedule occasional trips to
access the specialized skills or respite care offered by the RCSCs.
Governor Warner and the DMHMRSAS have preserved the option for choice of
placement for others who need the unique services provided by TCs. Because
each individual has different needs and options for supports, there is no
formula that can dictate the "best" residential placement. Parents or
guardians should be able to choose what is best from among available
options for those who qualify. As the population with MR ages, and as more
babies with special needs are born, integrated intensive care as provided
by TCs will be in ever greater demand. We need the TCs as the safety net of
the system of care. I know TCs are not for everyone. However, if your child
has significant disabilities that would make community care less
appropriate or secure, arrange a tour and consider asking your Community
Service Board case manager or local TC director to help you investigate
this option for respite and residential care.
Services Provided by Virginia's Five Mental Retardation Training Centers
There are five regional, residential training centers for individuals with
a primary diagnosis of mental retardation operated by the Virginia
Department of Mental Health, Mental Retardation and Substance Abuse
Services, an agency of the Commonwealth of Virginia. These include: Central
Virginia Training Center (Madison Heights); Northern Virginia Training
Center (Fairfax); Southeastern Virginia Training Center (Chesapeake);
Southside Virginia Training Center (Petersburg); and Southwestern Virginia
Training Center (Hillsville).
The training centers offer a range of highly structured services that
address the occupational, speech, vocational, motor development, and
physical health care needs of their residents. All five training centers
are certified as intermediate care facilities (ICF/MR) under Medicaid.
Training centers services are client-centered and highly individualized. To
meet each individual's challenging and extensive requirements for care and
habilitation, a network of clinical and direct care staff are available on
a 24-hour basis. Training center services are provided in the least
intrusive and non restrictive manner. They are designed to promote growth
and development in an integrated and diverse environment. Some training
centers have agreements with community services boards (CSBs) for off
campus vocational programs. Upon request from the CSB, behavioral and
habilitation training can be provided to community providers serving
clients from the training centers.
The admission process into a training center is coordinated by the CSB that
is responsible for providing case management services to the individual who
is seeking admission. This is almost always the CSB serving the city or
county in which the applicant resides.
To be eligible, a person must have a primary diagnosis of mental
retardation (MR) and meet certain criteria related to the level of
functioning that qualifies him or her for admission to an intermediate care
facility. It must also be determined that the center can provide the most
appropriate services based on the intensity of need. After the CSB review
is completed, it then submits an application to the training center that
serves its region. The training center reviews the information provided in
the application package. If the applicant is determined to be eligible for
admission, a circuit court judge must certify the individual for admission.
The facility director then sets a date for admission.
The training centers offer emergency and respite admission if space is
available. Again, the CSB is the point of entry. (See list of CSBs on p.
34.) The CSB with case management responsibility also coordinates discharge
planning with the training center when a resident, with his
guardian/legally authorized representative (LAR) or family member has
chosen to continue his training and habilitation in the community.
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2. MASSACHUSETTS: Guardians unhappy with arrangements
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Summary: This article focuses on transfer trauma.
By Galen Moore
Daily News Staff
Thursday, March 2, 2006
The population at the Walter E. Fernald Developmental Center has dropped
below 200, and administrators are consolidating the residents and shutting
some facilities.
Guardians of some of the most severely disabled residents say the
administration is moving them out and closing facilities without regard for
their welfare.
In particular, the move last week of four profoundly retarded men has
generated a flood of protest, with both guardians and staff saying the
four, who tend to show aggressive behavior, will suffer in their new living
arrangements.
Two of the men are blind, and one requires physical exercise to let off
steam.
One of the blind residents, 61-year-old George Staples, hit his head on the
wall on his first night in a new, smaller apartment, opening a cut over one
eye. Staples can t speak, see or hear, and is easily agitated.
"They couldn t get him into bed," said George Staples legal guardian, his
brother Dan Staples. "He ended up sleeping on his couch. In his clothes."
George Staples has lived in Fernald for 20 years, staying probably the
entire time in Farrell Hall s Apartment 4, his brother said.
That apartment, along with the entire basement floor of Farrell, is to be
closed. Apartment 4 contains two day rooms, a small dining room and several
bedrooms connected by long hallways. The unit s four occupants are moving
upstairs into another apartment, less than half the size.
Facility Director Linda Montminy said the moves are justified. "When census
is reduced, sometimes you have to consolidate your resources to use them
most efficiently," she said. "The downstairs area was really made for many
more people living there."
In 2003, the state announced plans to close Fernald. This February, a
federal judge halted transfers out of the facility, after residents claimed
43 residents transferred since 2003 were not given equal treatment in their
new living situations. A 1993 court decision specified equal or better
treatment for all residents.
Montminy does not control patient transfers out of Fernald, she said, but
residents who move within the institution will receive "clinically equal"
care, meaning no reduction in services.
Guardian Joan Campbell disagreed.
"It s just not enough living space for him," she said of her brother,
Charlie Campbell. Campbell, 54, gets agitated and "likes to run," to calm
himself. But when she visited Charlie the day of the move, it was George
Staples and another blind roommate who affected her the worst, Joan said.
"Those poor men. They didn t have any idea where they were. They reacted
terrible, they really did," she said.
One Fernald staff member, an employee of over 15 years, said moves are not
uncommon, but in these residents case, it could be harmful. The four former
residents of Apartment 4 are diagnosed as prone to aggressive and harmful
behavior, said the employee, who did not want to be identified for fear of
losing her job.
"They smash things, if not watched carefully," she said. "They can't tell
you, I'm confused. The only way of them telling you is for them to scream,
holler and injure themselves."
The employee said this move had not been taken with the same care as
earlier moves, when residents were given the chance to adapt by visiting
their new quarters several times before moving.
Montminy disagreed, saying staff did take steps to make the moves as easy
as possible. "Clinical teams" assigned to each patient, made up of
occupational therapists, psychologists, nurses and others, reviewed each
case and identified a process for each move.
"I'm very proud, really, of the clinical teams. They met with everybody --
all the staff," Montminy said.
But Ken Mallory, whose sister moved apartments to make room for some of the
men, said he has heard nothing from the facility about any process to
ensure residents welfare.
Nancy Mallory, 65, will move into a shared room after two years in a room
of her own. He said his sister is doing fine, but he and other guardians
have heard nothing about what will happen if these moves should become
harmful.
"They have no articulated plan for what to do if that happens," Mallory
said. "That's the cruelest part of this."
Meanwhile, Mallory and other guardians said Montminy has not returned their
calls and letters.
Staples said he has heard administration s rationale of consolidation. It
doesn't matter to him, he said. "I m not interested in budget issues or
anything like that. I'm interested in what's best for George and the rest
of the people who are with him."
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3. SOUTH CAROLINA: Bill calls for state agency to investigate abuse of
disabled
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Currently agencies that care for the individuals conduct probes themselves
By RODDIE BURRIS
rburris@thestate.com
Reports of abuse and neglect of South Carolinians with disabilities would
be examined by a special S.C. Law Enforcement Division under a plan being
discussed by lawmakers. Such a unit would provide independent
investigations of the agencies charged with caring for the disabled -- the
departments of Mental Health, and Disabilities and Special Needs.
Those two agencies have long been criticized because they currently
investigate themselves when criminal abuse and neglect allegations arise in
the facilities they operate across the state.
Advocates for disabled, vulnerable adults said a change is essential for
safety's sake.
Common sense says an organization can't investigate itself effectively,"
said Gloria Prevost, executive director of Protection and Advocacy For
People with Disabilities Inc., an organization authorized by state and
federal law to protect the rights of people with disabilities in South
Carolina.
Both Mental Health and Special Needs have used internal law enforcement
squads to investigate maltreatment of clients that might constitute crimes,
she said.
The push for change was advanced out of a condemning report of the
Department of Disabilities and Special Needs issued by Protection and
Advocacy. The report last fall found that few incidents of physical and
sexual abuse, neglect, and misuse of medications in state-funded
residential facilities are reported.
Fewer such incidents are properly investigated, primarily because the
facility administrators conducted their own investigations, and offenders
were rarely held accountable, it found.
That two-year report, called Unequal Justice for South Carolinians with
Disabilities, reflected 18 of 50 cases alleging abuse and neglect. Special
Needs, which is earmarked for a $168 million budget next year, is the state
agency with primary responsibility for serving residents with developmental
disabilities, spinal cord injuries and autism.
A new audit out last week also found shortcomings in the way Special Needs
administers Medicaid through its providers to mentally retarded and
disabled clients in the community, rather than institutional programs.
In addition to the findings, the South Carolina Supreme Court on Tuesday
heard oral arguments in the case of a Lexington County woman whose daughter
was raped by three men in a group home operated by Babcock Center under a
contract with Special Needs.
Babcock and Special Needs have been under fire from auditors and advocates
in recent years for deaths, injuries, and abuse in their facilities and for
failure by Special Needs to provide oversight. Babcock was forced last year
by Special Needs to abandon services to half of its 634 clients because of
the problems.
The ruling in the Lexington County case could have far-reaching effects in
the care of the disabled in South Carolina and more explicitly define what
Special Needs' duties of care are to its clients.
The two agencies support the change. Mental Health and Special Needs have
been allowed to self-investigate serious abuse and neglect allegations
under an agreement between those agencies and the state Long Term Care
Ombudsman office.
The ombudsman office has said it supports the single investigatory unit to
look into abuse.
Under Lt. Gov. Andre Bauer's Office of Aging, the ombudsman program
previously sought a $780,000 budget increase to hire additional
investigators.
Along with the special SLED unit, the new bill, if it becomes law, would
give the agency three critical functions in abuse and neglect cases.
The unit would coordinate calls alleging serious abuse and neglect, and
investigate all fatalities in state facilities. When appropriate, the unit
would refer calls to local law enforcement agencies, the state ombudsman,
or the Department of Social Services.
Under the bill, the SLED unit would answer a 24-hour hotline at which abuse
and neglect could be reported.
Gov. Mark Sanford included $450,000 in his fiscal 2006-07 budget to fund
the seven new SLED positions. The Ways and Means Committee draft budget
includes $430,000.
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4. MISSOURI: Bill calls for higher community care standards
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Senator Tim Green and Representative Gina Walsh have introduced bills that
would require community provider homes for people with mental retardation
and developmental disabilities to have the same standards and regulations
that state habilitation centers have.
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5. FLORIDA: Service Agency Chief and Father Envisions A Community for
Handicapped Residents
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By Eric Pera
The Ledger
March 13, 2006
Jack Kosik clambers up the hill, shoes sinking in the soft sand -- 22,000
cubic yards of it to be exact -- most of which was purchased by his
nonprofit agency, Noah's Ark, at a discount of $18,750. The sand will be
used to fill in low-lying acreage on a 56-acre tract that Kosik plans to
develop into a gated community for the developmentally handicapped and
their families.
He's not a developer. He's a divorced dad of two who dabbles in real estate
and operates Noah's Ark, an advocacy and service agency for the mentally
handicapped.
But Kosik does have a background in construction management as a former
vice president and division manager for Ryland Homes. And his agency's
president is Bill Sammons, a commercial real estate broker and the parent
of a developmentally disabled child.
Kosik's desire to develop a gated community combining housing and
employment is driven by his 22-year-old daughter, Brittany, who is mentally
disabled. In high school, Brittany was a leader on disability issues,
visiting Tallahassee and striking up a friendship with Gov. Jeb Bush that
continues by way of e-mail.
It was that friendship that helped Noah's Ark acquire the 56 acres of land
formerly under control of the Florida Fish and Wildlife Conservation
Commission and targeted for expansion of the Tenoroc Fish Management Area.
The wildlife agency was adamantly opposed to letting go of the property,
but had a change of heart after Bush, aided by Sen. Paula Dockery,
R-Lakeland, intervened.
"They've had a friend in the governor for a long time," said Jim Studiale,
Lakeland's director of community development.
Ultimately, the city and wildlife officials traded parcels of undeveloped
habitat, a portion of which was donated to Noah's Ark.
AMBITIOUS PLANS
It could take another six to 10 years to develop the main, 25-acre campus
at a cost of $6.3 million, with room for 120 units housing up to 240.
Disabled residents would pay reduced rent through various subsidies, while
parents and caregivers would pay normal housing rates.
The hurdles of raising construction money through grants, private
donations, government-backed low-interest loans, in-kind gifts and
services, and other means are enormous.
Kosik's optimism is unwavering.
"Isn't this gorgeous up here?" he asked from atop the 12-foot-tall sand
pile offering a panorama of meadows, marshes and canals abutting the
northern tier of Lake Parker. "It'll come together, it'll happen, and it's
going to get national attention," he said.
The dream isn't Kosik's alone. His Lakeland-based organization represents
dozens of families throughout Polk. He's already fielded queries from
parents in every corner of the state. Noah's Village has received
additional support from Rep. John Stargel, R-Lakeland.
Stargel and Dockery are co-sponsoring a state budget request of $1.1
million to expedite development of the village, which Stargel considers a
priority project.
"It seems to be a good fit for a constituency that clearly doesn't have a
voice," he said. "It seems a worthwhile project . . . (one) the city of
Lakeland felt strongly about. It addresses a need."
A REALISTIC APPROACH?
The idea of segregating the developmentally disabled in a closed community
runs counter to the state's focus on having them live in regular settings
rather than large group homes or institutions.
But given the lack of services and affordable housing, Noah's Village is
laudable, said Eric Olsen, a district manager for the state Agency on
Persons with Disabilities.
"I applaud his (Kosik's) efforts and enthusiasm," Olsen said, "but we have
for a long time looked at community inclusion as the way to go, moving away
from segregation."
Kosik said Olsen is thinking like a bureaucrat who ignores the realities of
being mentally handicapped in general society.
Developmental disabilities encompass people with spina bifida, autism,
cerebral palsy, Prader-Willi syndrome and mental retardation.
Those with less severe mental delays can live anywhere with relative
success, Kosik said, but many are easily victimized because of their
innocence and lack of cognitive reason.
For instance, they're easily swindled out of money, he said, and they're
often shunned by neighbors.
At Noah's Village they would be immersed in a supportive environment,
surrounded by caregivers but living independently.
Kosik envisions residents driving golf carts on grassy paths, free to roam
the grounds with some supervision. Ideally there would be employment
opportunities on site, such as a nursery, fish farm or farmer's market.
Services such as supportive living and skills training would be guaranteed
to residents, who may wait three years or more for similar assistance
through the state.
At any given time there are 11,000 to 12,000 people with developmental
delays statewide waiting to receive government assistance.
In Polk, the number is roughly 480.
Kosik said aging parents fret about leaving their disabled children to fend
for themselves.
That won't happen at Noah's Village, he said, to be patterned after Lamb's
Farm, a 72-acre residential community in Libertyville, Ill.
It doubles as a tourist destination featuring a petting farm, pet shop,
restaurant, bakery, thrift shop and more, employing handicapped residents
who have easy access to vocational, recreational and other services.
SECURING A FUTURE
Kosik's own fears over his daughter Brittany's future drive his zeal.
Adopted at birth, Brittany was 1 before she showed an unwillingness to try
to walk and other ominous signs of mental delays.
After graduating from high school, Brittany waited 41/2 years to receive
essential state services, such as having a supported-living coach for a few
hours each day, Kosik said.
The coach teaches her personal skills such as cooking, shopping and
housecleaning, as well as hygiene.
Today, Brittany supplements her Social Security income of $603 a month by
working two days a week at Westshore Pizza, folding takeout boxes and doing
other light duties.
She pays $150 a month to live with two other disabled women at a home
operated by Noah's Ark and built on land donated by First United Methodist
Church of Lakeland, which also contributed $24,000 toward construction.
Noah's Ark broke ground last week on two more homes in the same vicinity
near Lake Morton, also on properties donated by First United Methodist.
At least half of the construction and materials will be donated in-kind,
Kosik said, which is how he sees Noah's Village taking shape.
"The state will never be able to properly fund the resources," he said. "We
need initiatives like this."
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MEMBERSHIP, CONTRIBUTION AND REGISTRATION FORM
(see also: http://vor.net/RegForm2006.html)
___I want to personally tell Congress how important Medicaid is for people
with mental retardation. I'll be there!
___ I'm sorry, but I am unable to join you in Washington, D.C., but I would
like to support VOR's efforts. I'll use this form to JOIN or make a
CONTRIBUTION.
Send form to Voice of the Retarded 5005 Newport Dr. #108, Rolling Meadows,
IL 60008
Fax: 847-253-6054 vor@compuserve.com * Phone: 847-253-6020 * A
non-profit 501(c)(3) organization
Name(s) __________________________________________
Address __________________________________________
City, State, Zip ____________________________________
Home Phone ______________________________________
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__________________________________________________
Charge card: __ MC __ Visa Expiration Date _______
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Signature __________________________________________
Mark all that apply:
___$50 per person for member registration at the Annual Meeting on
Saturday, June 11 if paid by May 31, 2006 <2006 WASH-REG>
___$60 per person for member registration after 5/31 <2006 WASH-REG>
___$75 per person for non-member registration at the Annual Meeting on
Saturday, June 11 includes one-year membership if paid by May 31, 2006.
<2006 WASH-REG>
___$85 per person for non-member registration after 5/31. Membership
included.
<2006 WASH-REG>
___Dues ($25) and/or donation of $_________is enclosed. <2006
WASH-DONA>
___ I/We will attend the Washington Initiative only
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THANK YOU!
Contact Tamie Hopp at vor@compuserve.com or 605-399-1624 with any
questions.
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