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VOR Weekly E-Mail Update
January 13, 2006
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1. VOR 2006 ANNUAL MEETING AND WASHINGTON INITIATIVE
IMPORTANT DATES - MARK YOUR CALENDARS - PLEASE JOIN US
2. OHIO: Changing the face of residential care -- New center planned in
Monfort Heights
3. INDIANA: Life after Muscatatuck
4. WISCONSIN: Group homes must offer disabled adults attentive care,
nurturing (editorial)
Coming Up: There will be no VOR Weekly E-Mail Update, January 20, 2006. I
will be traveling to the Rolling Meadows office next week and will also be
away from e-mail during this time. Thank you for your patience.
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1. VOR 2006 ANNUAL MEETING AND WASHINGTON INITIATIVE
IMPORTANT DATES - MARK YOUR CALENDARS - PLEASE JOIN US
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Planning is well underway for VOR's 2006 Annual Meeting and Washington
Initiative. In the near future, I will disseminate a formal registration
form and meeting announcement. In the meantime, please save the dates and
plan to join us. The agenda of events, as well as the agenda of
presentations for the Annual Meeting, follow. This is a meeting you don't
want to miss!
AGENDA OF EVENTS
Friday, June 9, 2006, 1:00 pm: VOR Board of Directors Meeting (VOR members
are welcome)
Friday, June 9, 2006, 6:00 pm: State Reports
June 10, 2006, 9:00 am - 4:00 pm: Annual Meeting (Registration fee: $50
members/$75 nonmembers)
June 10, 2006, 6:30 pm: Networking Dinner
June 11, 2006, 3:00 pm: Initiative Legislative Briefing
Week of June 12, 2006: Visits to Members of Congress
ANNUAL MEETING AGENDA
(tentative; subject to change)
9:00 am Mary McTernan, Ph.D., President Message
10:00 am Connie Garner, Disability Policy Advisor to Senator Ted Kennedy:
The HOPE Act: How an idea becomes a bill and the role of advocates in the
legislative process
12:00 Catered Lunch
1:00 Bill Choslovsky, Esq., DLA Piper LLC, attorney to Misericorida
families in Ligas v. Maram, an Illinois Protection & Advocacy.
2:45 Speaker to be announced: Grassroots advocacy program - making your
voices heard in your states
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2. OHIO: Changing the face of residential care -- New center planned in
Monfort Heights
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Changing the face of residential care -- New center planned in Monfort
Heights
By Mike Boyer
December 16, 2005
Cincinnati Enquirer
A major redevelopment is planned to reshape the 37-acre campus of the
Resident Home Corp. in Monfort Heights into one of the nation's first
life-care centers for aging mentally retarded and developmentally disabled
people.
The nonprofit, 40-year-old agency is about a year away from submitting
formal plans, but is planning an approximately $50 million redevelopment
of its campus off West Fork Road, near Mount Airy Forest, into a village
with a range of living arrangements providing continuing care for mentally
retarded and developmentally disabled individuals and their families.
Executive director Patrick Maynard envisions a campus providing different
housing options for 200 or more people.
"We have a beautiful property here, but it's underutilized," said Maynard,
who said the Resident Home board hasn't encountered anything elsewhere
similar to what it plans.
Founded in 1963, the former Resident Home for the Mentally Retarded was
established as a residence school in 1963. In the 1980s, as the trend for
community schooling expanded, more and more Resident Home clients moved
into group homes or back with their families. The agency expects to move
the last six residents into group homes next year.
This year, Resident Home Corp. acquired 33 homes from Hamilton County,
where about 80 mentally retarded and developmentally disabled individuals
live. Maynard said Resident Home expects to spend about $150,000 annually
to improve those homes.
As the mentally retarded and developmentally disabled live longer, a
debate has evolved about how to provide continuing care, Maynard said.
The number of adults ages 60 and older with developmental disabilities is
expected to double by 2030 to 1.2 million from 626,000 in 2000, according
to the Rehabilitation Research and Training Center on Aging with
Developmental Disabilities at the University of Illinois at Chicago.
The center's associate director, Alan Factor, said an estimated 2.8
million Americans with developmental disabilities are living with their
families. In an estimated 25 percent of those families, the primary
caregiver is age 60 or older.
There's a waiting list of 55,000 to 87,000 families nationally for
residential care services, he said.
"There's a tremendous backlog of people waiting for facilities, and that
number is expected to become more critical with the aging of the baby boom
generation and the aging of those with developmental disabilities," Factor
said.
"We've never really had to deal with this before, but many of the people
we take care of are reaching their 30s, 40s and 50s, and they need more
options," Maynard said.
The problem is that both the mentally retarded and their parents are
living longer, and they require different levels of care. Many types of
care The strategy developed by Resident Home calls for several living
options, including independent-living units such as one- and two-bedroom
apartments and condominiums; assisted-living units; and a nursing-level
care facility offering around-the-clock medical and custodial care. In
addition, the life-care center would provide support services such as
meals, housekeeping, transportation and personal assistance, as well as
recreation and education activities for residents.
To develop the project, the Resident Home board has retained architecture
firms Cole + Russell of Cincinnati and Fanning Howey, a Celina, Ohio, firm
that specializes in school design.
An eye on expansion
In the meantime, Resident Home is planning a formal marketing study this
year to assess potential demand. With a $9 million annual budget, Resident
Home Corp. has a full-time staff of 165 and provides services to about 400
mentally retarded and developmentally disabled individuals. Over the last
year, it has begun offering its services at group homes in Butler and
Warren counties. Next year, it expects to begin expanding into Northern
Kentucky by buying or creating group homes there, Maynard said.
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3. INDIANA: Life after Muscatatuck
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Summary: Officials defend closing of institution for mentally disabled
Hoosiers, but some families their loved ones' care and quality of life
have diminished.
Indianapolis Star
January 1, 2006
By Jason Thomas
When his son pushed away his plate of food, Frank Migliano Sr. knew
something was wrong.
Migliano took his son to the doctor, which resulted in an emergency
ambulance trip to Methodist Hospital, where the 52-year-old -- mentally
disabled due to a genetic disorder -- was treated for a blood infection.
"We almost lost Frank," Frank Migliano Sr., Fishers, said of his son,
Frank Jr.
Migliano's scare underscores the challenges families have faced since
April, when the state closed the Muscatatuck State Developmental Center in
Jennings County in southeastern Indiana. Frank Migliano Jr. had been a
resident there for 42 years before its closing.
First announced in 2001, the Muscatatuck shutdown was part of the state's
sweeping plan to shift care for the mentally disabled from institutions to
community settings.
By July 2007, Indiana's last facility for the mentally disabled, Fort
Wayne State Developmental Center, will close. The center now serves 196
residents. Officials say the integration of mentally disabled residents
into the community, which got its start nationally in the 1960s and 1970s,
allows for more personal care while saving the state millions of dollars.
But the plan is not without its flaws: At least two former Muscatatuck
residents have died since moving into the community. One drowned, and
another choked to death. Frank Migliano Sr. said many former Muscatatuck
residents like his son today have a poorer quality of life.
The facility's "size outgrew its need, but I feel that the state's main
goal was to get these people out of their hair, because out of sight, out
of mind," he said.
The closing forced Migliano's son and more than 300 other developmentally
disabled residents to find new homes, mostly in residential neighborhoods.
While looking for a home a little more than a year ago, Frank Jr. spotted
a basketball goal outside the residence of a group of developmentally
disabled people in Carmel. "He's a ball fanatic," said his father, who is
76. "He has to have a ball in his hand all the time. He went out back and
found a basketball and started throwing it up at the basket.
"We asked him, 'Frank, would you like to live here?' He has no speech but
understands just about everything you say to him. He nodded very
vigorously in the affirmative. I looked at the place and thought it was
probably as good as we could do." A few months later, Frank Jr. fell ill.
"He couldn't eat. He usually eats two plates," his father said. "At
Muscatatuck, when anything like that happened, he was immediately seen by
doctors."The staff at the group home thought he was dehydrated. "I can't
blame them, because they're not qualified to make those decisions,"
Migliano said. "What turned out fine could have been tragic."
Around 1992, the state began moving residents from its centers for the
mentally disabled into smaller, homelike settings. "When you think about
it, it's really hard for these people," said Dave Gootee, deputy director
of the Division of Disability and Rehabilitative Services for the Indiana
Family and Social Services Administration. "I hear so many times where a
mom or dad will say, 'My doctor told me 40 years ago to put them in an
institution and never look back.'
"Parents don't want to revisit that decision. And yet if they think about
it from their son's or daughter's point of view, it's the best thing they
can do," he said.
Indiana now assists 10,000 mentally disabled people, with 5,000 others on
a waiting list.
Of the residents who left Muscatatuck, only five were returned to the
state's care, and they have since been placed back into the community.
Such settings benefit those with disabilities, said Dennis L. Rosebrough,
an agency spokesman.
"We believe, and I think the evidence shows, that the noninstitutionalized
care model . . . has really developed beyond what even family members
anticipated and expected," Rosebrough said. "The headline really is not the
closing of the facility but the state of Indiana adopting a better care
model for our residents."
In September 2004, then-Gov. Joseph Kernan announced that Muscatatuck
would become the Muscatatuck Urban Training Center. The Indiana National
Guard runs it today and conducts homeland security drills there.
In the crowd at the announcement at Muscatatuck was Wanda Fell, whose son,
Jason, had lived at the center for almost 10 years. "They had the National
Guard there, and if I could have done what I wanted to do, then the
National Guard could not have stopped me," said Fell, 51, who lives in
Depauw in Southern Indiana. "Because it was like they had no thought to
the good that Muscatatuck had done."
Jason Fell, 26, is blind, deaf and mentally disabled. In November 2004, he
moved into a group home in New Albany. Two months later, after finding her
son filthy and after he had a fight with his roommate, Wanda Fell removed
him from the home. Jason Fell now lives in North Vernon, 85 miles from
his family.
"It's heart-wrenching, because (Muscatatuck) was ugly," said Tonya Hood,
29, Jason's sister. "Jason couldn't see that it was ugly. Jason was happy
there. He's happy where he's at, too. But he's had a really hard year. Mom
and Dad have had a really hard year."
The stories of the Miglianos and the Fells have happy endings. Jason
Fell's primary caregiver, Kim Shaw, worked with him while he was at
Muscatatuck. Wanda Fell likened Shaw to Anne Sullivan Macy, Helen Keller's
teacher."She's my Annie Sullivan," Fell said with a grin.
For Frank Migliano Sr., his son lives 15 minutes away. Muscatatuck was
almost two hours away. Frank Jr. also attends a rehabilitation center in
Lebanon each day where he keeps busy with activities such as arts and
crafts."We've learned to adjust," his father said of the changes. "We
accept these things, because there's nothing else out there."
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4. WISCONSIN: Group homes must offer disabled adults attentive care,
nurturing (editorial)
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By Bob Vermillion (Oconomowoc, WI. Mr. Vermillion is a retired teacher)
Dec. 27, 2005
Milwaukee Journal Sentinel
As parents of a developmentally disabled adult in a group home, my wife
and I recognize there are different philosophies, or at least
implementation of philosophies, about a nurturing, safe environment called
a group home.
One is a group home integrated in the community - clients participating in
activities, social events, religious practices and community celebrations.
It is a small, home-like setting where housemates support each other,
understand each others' uniqueness and where there is comfort with each
other and the staff.
The staff is a supportive and caring group that takes pride in cleanliness
of the home, offers personal touches and nourishing food and supports or
prods a client as a good parent does when it is necessary for growth. On
the other hand, we know a group home might only be a house in a
neighborhood where some clients are simply assigned - nearly warehoused.
The client is not harmed, but there is disunity between residents, and
staff is too transitory to establish connections.
The staff may not be well-informed about the skills and uniqueness of each
individual, and unless a client is bold enough to ask, the staff does not
always recognize individual needs. Too often the staff defers to the
provider's bureaucracy to excuse outdated fixtures, unavailable activities
or poor
housekeeping.
We're worried. Our daughter resides in a group home in order to be as
independent of us as she can possibly be. At the same time, her
connections to our family and our lives remain important.
But our daughter is also in a group home because she will need to be cared
for when we are no longer living. We need to get this right while we are
here - now! It is tormenting us to try to guess who will fill the gaps
when we're not here.
Who will help clean and sort accumulated papers, notes, greeting cards and
collected paraphernalia? Who will clean her laundry and deal with stubborn
stains? Who will be responsible for seeing that her worn clothing is
replaced?
Who will see that her room is really clean? Who will ensure the windows
are washed, storm window is closed, bed skirt is ironed and comforter that
has spots is cleaned?
If our daughter could thoroughly clean her room, iron her clothes and
balance her checkbook, she would not need to be in a group home. Just
because she is an adult and should be able to do certain tasks does not
mean she can. Nor does it means she has the judgment to accomplish daily
living tasks. She needs a staff that recognizes and accepts that. How can
we see that she is with a staff that is sensitive to her independence yet
does not let her flounder?
We want advocates accessible to her (maybe staff) who can direct things
helpfully. We do not want a situation where the staff must "respect
privacy" to the point where her room becomes a clutter of jumbled
treasures and her emotional needs are not supported. She needs nurturing,
caring and direction.
What can be done?
We must press for worthy compensation for direct-care workers. Some
agencies call them "skills trainers" or "house parents," but whatever the
title these staff members who directly work with the client are the
fulcrum for successful programs.
Directors, coordinators or supervisors (along with parents or other
relatives) can assure plans are in place and that individual service plans
are appropriate, but it is the direct-care staff that implements the
plans. This staff worker is essentially at an entry-level position. And
with cutbacks of funds in social service agencies, some providers cut
benefits and wages for an already low-paying job. Some providers have had
their funding cut so some non-profits must tap into their endowments to
meet basic costs. Nevertheless, we must challenge a provider to ensure
direct-care staff is acknowledged as important.
Working with anyone with special needs is a challenge; provide pay
commensurate with that responsibility. In government and social agencies,
each of us needs to ask whenever the occasion arises whether the worker
who actually has contact with the client is receiving due wages.
We should be vigilant and take every opportunity to create public
awareness. As an individual in a neighborhood, be aware of where group
homes are located. Find out who's in them and what type of client resides
there. Find out who runs the homes, who staffs them. Introduce yourself to
staff and clients when you can. Ask if you or your church or civic group
can help - with yard work, with cleaning a room or a basement or painting
a hallway. Can your organization provide a night out for
clients? A movie? Pizza? If, in fact, the model for these group homes is to
integrate the disabled
into a community, know that it should be a two-way street. Make an effort
to be informed and helpful. Someone has suggested an "adoptive advocate"
role. There may be restrictions because of confidentiality and privacy
rights guaranteed to clients, but wouldn't it be worth exploring? Is there
a client, particularly one with no involved family members, who might
benefit from someone else showing an interest and a helping hand and
serving as an advocate for that person? Engage your state legislator or
county supervisor in a conversation about specifics. Specifics are hard to
talk about. Budgets are decided by category. It is frustrating for
parents and other caregivers to speak at budget hearings, for instance,
when they are competing for the same dollars as other needy groups. The
health and human services budgets serve the developmentally disabled, the
pregnant teen, the addicted, the incarcerated, the elderly and the list
goes on.
Talk to your representatives about people, not categories. Rather than
asking about the budget for the senior meal program, query about one menu
in one community. Ask how your neighbor Sam gets to the meal site? What
transportation is available for Sam? Work to keep conversations focused on
one human being so that the representative cannot retreat to generalities
of budget categories.
With the developmentally disabled, ask how clients are assigned to homes?
How did Samantha get assigned to this home? Are clients in Samantha's home
of similar age or similar needs? Is everyone in Samantha's home the same
gender? Again, persistence is needed because representatives are reluctant
to be specific and may be cautious because of confidentiality and privacy
restrictions.
Be guided by common sense. Couch all expressions of concern and query in
terms of a human being. Policies might require eight pages of rights and
responsibilities that a client has, but if the client cannot read, care
and compassion rely on a capable, well-compensated direct "skills trainer"
who can respond to a unique human being. And care and programs rely on a
knowledgeable county board, state legislator and a community of neighbors
who work to secure a good life for each individual.
It is our dream that before we go, we can see the caring and support in
place for our daughter to enjoy a comfortable life. Our mission now is to
try to get these pieces in place and operating for her and for others.
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Tamie Hopp
Executive Director
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