***************************************************************************
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 3, 2006
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Table of Contents

STATE NEWS UPDATE

1. New 50-State Survey Reports on State Actions and Costs Related to
Medicare Prescription Drug Benefit

2. CALIFORNIA: Opportunity to Repair Act Withdrawn
3. UTAH: Judge rules against disabled residents
4. MARYLAND: Leventhal blasts Grafton School for closing
5. NEW JERSEY: Advocate rallies support for disabled
6. WASHINGTON, D.C.: Disabled In Jeopardy, Report Says; D.C. Group Home
Problems Remain
7. JOIN, CONTRIBUTE or PARTICIPATE in VOR's Annual Meeting and Washington
Initiative: Form for all three at the end of this Update. 

COMING UP: Calling all Siblings - Adult Siblings of Individuals with
Disabilities Research (Survey)
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1. New 50-State Survey Reports on State Actions and Costs Related to
Medicare Prescription Drug Benefit
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The Kaiser Family Foundation's Commission on Medicaid and the Uninsured
undertook a 50-state survey of Medicaid officials to assess states' early
experiences relating to the transition of low-income seniors and people
with disabilities enrolled in both Medicaid and Medicare (dual eligibles)
to the Medicare Part D drug benefit.  Conducted by Health Management
Associates, the survey covers the types of problems observed by states
during the transition of dual eligibles to the Medicare drug benefit, state
actions to correct problems and ensure temporary coverage, and specific
data on costs incurred by states from these temporary programs.

On January 1, 2006, the prescription drug coverage for over 6 million dual
eligibles was transitioned from Medicaid into the new Medicare prescription
drug benefit.  Almost immediately, the Centers for Medicare and Medicaid
Services at the federal level and state and local officials noticed
problems that made it more difficult for some dual eligibles to obtain
needed prescriptions.  Because dual eligibles typically have more extensive
health and prescription drug needs than other beneficiaries, many states
had been preparing for problems and moved forward with temporary programs
to ensure that these beneficiaries obtained needed medications during the
transition to the Medicare drug benefit.  The federal government has since
committed to reimbursing the states for the costs associated with the
temporary coverage programs.

Medicaid officials from all 50 states and the District of Columbia
responded to the survey.  It provides a state-by-state breakdown of
temporary coverage programs, including the number of duals receiving
prescriptions, total prescriptions, and the cost of coverage (see Table 2).
 The survey also finds that in the first month of implementation:

* Over 60 percent of states reported problems that affected a significant
number of dual eligibles;
* 37 states implemented temporary coverage programs for dual eligibles; and
* The most common problems included incorrect cost-sharing charged to
beneficiaries (49 states), pharmacies could not bill plans (44 states), and
beneficiaries were unable to obtain non-formulary drugs (43 states).

The Foundation will continue to monitor issues related to the
implementation of the new Medicare prescription drug benefit and its impact
on the Medicaid population. The report is available online at:
http://www.kff.org/medicaid/7467.cfm.

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2. CALIFORNIA: Opportunity to Repair Act Withdrawn
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Source: The Ragged Edge, March 2006

California Assistant Attorney General Alberto Gonzales has told activists
there that the 'Opportunity to Repair' Act has been withdrawn and will not
appear as a ballot initiative in November. 

The initiative would have removed the teeth from California access laws,
allowing businesses to wait until sued to provide access -- and removing
the payment of attorney fees or damages in access cases. Activists have
mounted a vigorous effort
(www.raggededgemagazine.com/departments/closerlook/000771.html) against the
initiative, which was to have been circulated for the required number of
citizen signatures in February. Several weeks ago, the National Council on
Disability sent a letter
(www.raggededgemagazine.com/departments/news/000784.html) to California's
attorney general warning that the initiative was "undermining the
provisions of the Americans with Disabilities Act." 

One access activist is now suggesting a state-wide "televised summit to
provide those of us with disabilities living in California an opportunity
to discuss" with the business community "the lack of access in the built
environment throughout the state."

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3. UTAH: Judge rules against disabled residents
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By Pamela Manson
The Salt Lake Tribune
March 1, 2006

In a decision made public today, a judge ruled that Utah's lengthy waiting
list for disabled residents seeking aid does not violate federal law and
rejected a request that he order the state to come up with a plan to
provide help "at a reasonable rate."

U.S. District Judge Dale Kimball said the disabled Utahns who sued the
state failed to show they are at imminent risk of institutionalization
because of a lack of support services. Compelling the Division of Services
for People with Disabilities (DSPD) to serve everyone currently on the
waiting list - approximately 1,750 Utahns - "constitutes an impermissible
request for accommodation that would interfere with a comprehensive,
effectively working process," the judge said in a written order.

Kimball, while expressing sympathy for the disabled Utahns and their
families, noted that DSPD would need at least $8 million more each year to
provide the immediate help. The division has a budget of approximately $167
million and served about 4,250 people last year.

The Salt Lake City-based Disability Law Center filed a class-action lawsuit
in 2002 that said some people have been waiting years for services and are
at risk of being institutionalized as they lose basic skills and their
conditions deteriorate. The suit alleged that requiring people with mental
retardation and other conditions to wait so long violated the federal
Americans With Disabilities Act and the Rehabilitation Act.

State officials denied all allegations and said developmentally disabled
people with the greatest need are served first. Budget limitations make it
impossible to eliminate the wait, they said.

A four-day non-jury trial on the issue was held in January before Kimball.

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4. MARYLAND: Leventhal blasts Grafton School for closing
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Summary: Rockville school for autistic children closed, but it still owes
more than $450,000 on interest-free loan; CEO vows to repay it. 

Wednesday, Feb. 8, 2006
by Sean R. Sedam
The Gazette

The County Council wants a Rockville school for autistic children to pay
for closing later this month, breaking its lease, leaving families to find
new schools and endangering a center for infants and toddlers that shares
its space.

On Monday, Council President George L. Leventhal blasted the Grafton School
Inc. for closing while it still owes more than $467,000 on a $1.5 million
interest-free loan the county gave the private nonprofit in 1998.

Leventhal said the council wants to collect on the loan and for services
that Grafton still owes.So far, no new provider has been found to take over
the school and keep the services in the county, which parents and county
officials say are crucial.

This should be a very, very costly bad decision on Grafton's part, and our
county attorney should be doing everything he can to make sure it is,"
Leventhal said. And we are discussing that with Grafton and are pursuing
our options in that legal regard."

On Tuesday, Grafton's president and chief executive officer shot back.One
reason they may have a hard time securing a qualified provider, you may
have witnessed what some of the dynamics are," James G. Gaynor said.

Gaynor said Grafton did everything it could to remain open while facing
almost $3 million in losses.

[The County Council] better come up with a better design next time because
we wouldn't entertain going back," he said. Grafton is negotiating with the
county on repaying the loan, Gaynor said.

We will remain and continue to suffer losses even though that may
jeopardize services for the other 300 people we serve," at schools in
Virginia, he said. Grafton will meet every one of its obligations."

That means paying its half of the $1.5 million loan, Gaynor said. Grafton,
which opened in 1996, sent letters to parents on Dec. 2 announcing that it
planned to close this month.

That left parents and county and state agencies, including the county
school system, scrambling to find new schools for 42 children, including
some who live at the school.

Schools have been found for the 16 students placed at Grafton by the county
school system. But council members are upset that the nonprofit is walking
away from a facility that the state and county spent millions to renovate
just eight years ago.

In my 20 years here, I believe this has got to be the most egregious action
taken by any provider, anywhere in this county," said Councilman Michael L.
Subin (D-At large) of Gaithersburg.

Grafton has solicited bids to take over the Rockville facility, Gaynor
said. Proposals came from Chimes, Maryland, The Arc of Montgomery County,
Community Support Services Inc. and Community Services for Autistic Adults
and Children, he said.

Grafton was not able to find a suitable provider to pass its licenses to,
Gaynor said. Some providers did not want to pick up the residential
services; others did not want to take on so many students.

Clearly, we served a population or niche that existing providers aren't
fully interested in serving," Gaynor said.

On Monday, Leventhal accused Grafton and its operator of threatening the
future of the nonprofit Reginald S. Lourie Center for Infants and Young
Children.

Grafton shares the former Montrose Elementary School on Academy Way in
Rockville with the Lourie Center, which provides mental health and
education services for children with social, emotional and behavioral
problems.

In 1998, the Lourie Center and Grafton agreed to pay back a $1.5 million
county loan in monthly installments between January 2000 and July 2014.

As of October, the schools had made 68 of 167 monthly payments. Jointly,
they still owe more than $935,000, an amount that Leventhal and Subin said
they want to make sure Lourie is not left to pay by itself.

Someone has to talk to Lourie to make sure we're not hanging two bricks
around their next and throwing them into the water," said Subin, who sits
on the Lourie Center's board of directors.

William M. Schlossenberg, The Gazette's director of corporate affairs, also
sits on the board.

Gaynor was invited to the Monday meeting, Leventhal said.

He is not here," Leventhal said. He should be. He has a lot to answer for."

Gaynor said he had attended an earlier meeting with council staff and was
not trying to send a message" with his absence.

We supplied them with the information they needed," he said. It had become
clear that there weren't any viable providers to step in and take over and
that the County Council's going to have to step in and rebuild that
capacity in the future."

The school stopped teaching students on Feb. 3. Parents have been told that
the seven group residences, which housed 29 students, will close Feb.
17.Leventhal called for a meeting in March with representatives from the
state Department of Health and Mental Hygiene and the state Developmental
Disabilities Administration.

I want to figure out whether this is a canary in a coal mine or whether
Grafton is just a particularly bad and irresponsible provider," Leventhal
said.

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5. NEW JERSEY: Advocate rallies support for disabled
---------------------------------------------------------------------------

Tuesday, February 28, 2006
By ZACHARY NEEDLES

EWING -- State-funded services for families of the developmentally disabled
are in "dire straits" and the only people who can save them are the
families themselves, said a representative of a statewide advocacy group. 

Elizabeth Shea, an attorney and director of governmental affairs for ARC of
New Jersey, spoke to a small audience of concerned families during the
Provider's Fair and Forum at ARC/Mercer Inc. earlier this week about the
current statewide funding crisis disability service providers are facing.
"We're fighting budget cuts every single day," she said.

The real point of her speech, however, was to promote advocacy and empower
families to contact the state Legislature and demand a place for
developmental disability services in the 2006 budget.
"I don't need to tell you that our needs are not being met a lot of the
time," she said. "We need to remember that advocacy is the key to change."

Still, many people are timid or just plain cynical about trying to
negotiate with government, often believing they're either not educated
enough in their cause to argue for it or simply not believing they can make
a difference.

Shea acknowledged these reservations and offered encouragement, emphasizing
the power of personal experience over in-depth knowledge of facts and
figures when advocating.

"Legislators want to hear your personal story," she said. "They have other
people to worry about the details."

According to Shea, the personal consequences, which she calls the "if
nots," of insufficient funding for families should be continuously stressed
to state legislators.

"Make it clear how crucial funding is," she said. "It's not a nicety, it's
a necessity."

Ashok Shah, a member of the Hunterdon County Division of the Regional
Family Support Planning Council, knows how critical the situation is. As
the father of a 13-year-old son with a developmental disability, he has
felt the sting of budget cuts, specifically the decreased funding for
respite services, which offer programs designed to temporarily take care of
developmentally disabled people to give families a much-needed break from
full-time caretaking.

"In most instances, taking care of an individual with a developmental
disability is very stressful," said Shah. "Sometimes family members need a
break."

Although funding for these services is important to all families of the
developmentally disabled, Shea said those who are already struggling
financially have been and will feel the impact the hardest.
"Budget cuts greatly affect families who are needy," he said. "Services
aren't readily available to them or, if they are, they're too expensive. So
it's a double whammy."

To Shea, change is not as far out of reach as some may think. She believes
even a few people raising their voices could be enough to make legislators
take notice.

"Legislators hear so rarely from their constituency that even after three
calls to them you've developed such a better relationship with your state
Legislature than most of the people in your district," she said. "You can
be so much more powerful, so much more quickly, than you think."

6. WASHINGTON, D.C.: Disabled In Jeopardy, Report Says; D.C. Group Home
Problems Remain

By Karlyn Barker
Washington Post Staff Writer
Friday, February 24, 2006; A01

The District government has failed to meet promises to improve conditions
for mentally and physically disabled residents in its group homes, even
after a series of deaths stemming from inadequate care, a court monitor has
found.

The health and safety of group home residents remain in jeopardy because of
continuing problems with health care, nutrition and supervision, monitor
Elizabeth Jones said in a newly released report. She said D.C. officials
have made "little meaningful progress."

The city is behind in conducting investigations of deaths at group homes,
Jones said in a report filed this week in U.S. District Court. Even when
investigations were completed, the city failed to notify group home
operators for more than a year of the results, she said.

Nurses cited for neglect continue to work in group homes, the monitor
found. Also, the District missed a 90-day deadline this month that was
designed to address some of the court's most pressing concerns -- and
demonstrate the city's ability to make meaningful changes in the care of
its most vulnerable citizens.

"None of these critical actions were completed by the District," Jones
wrote, adding that she has "grave concerns" about the city's ability to
make reforms.

D.C. officials agreed yesterday that more must be done, with one
acknowledging that the city's performance was "pitiful."

Jones's comments were part of another blistering quarterly review in a
30-year-old lawsuit against the District that centers on the quality of
care for persons with mental retardation, many of whom also have severe
physical disabilities. In November, her report found that a pattern of
neglect had led to four deaths in the past year.

The new report was prepared in advance of a hearing Thursday before Judge
Ellen Segal Huvelle. The judge had given the city's Mental Retardation and
Disabilities Administration until Feb. 10 to show improvements in the
system, which serves about 2,000 people.

The D.C. government was supposed to move a designated number of group home
residents into better, safer housing; help others find assisted employment
opportunities; improve health care for at-risk clients; and recruit new
group home operators to provide higher-quality care.

In her report, Jones said the city made only three of 46 promised housing
relocations; found assisted employment for five of 42 people; didn't fully
implement health care improvements for 48 people; and failed to add even
one new provider to the mix of housing options.

Brenda Donald Walker, deputy mayor for children, youth and family issues,
and Marsha Thompson, interim administrator of the city's disabilities
agency, said they worked hard to meet the court's deadline but were unable
to do so.

"We over-promised, and we fell short," Walker said yesterday. "We are still
moving on our commitments, but it has proved to be a lot more complicated
than we had anticipated."

Mayor Anthony A. Williams (D) vowed to improve care several years ago amid
complaints of abuse and neglect. Williams, who is not seeking reelection,
wants to leave office with the agency on track to operate efficiently,
Walker said.

"We are determined to turn this around," she said.

The city has new group home operators "in the pipeline" but has not
completed the licensing and contracting obligations to get them up and
running, Walker said. Thompson agreed that compliance with the court order
had been pitiful but said it was "less pitiful" than when Jones was
preparing her report. She promised "up-to-the-minute statistics" on the
agency's progress at a March 6 oversight hearing by D.C. Council member
Adrian M. Fenty (D-Ward 4). "We don't have bad people; we've got bad
habits," Thompson said, adding that it was a hard job "to break old habits
and old ways of thinking."

In her report, Jones credited Thompson with "genuine commitment" and said
the agency has made some improvements, particularly in identifying health
care needs. But she recited a long list of chronic deficiencies, including
poor staff training; failure to transfer important information when
residents move to new housing; uneven quality of nursing personnel; and
failure to send adequate information to residents who have appointments
with physicians.

The District investigates deaths in the group home system. But Jones said
there is a backlog of 18 overdue death reports and more than 360 overdue
reports on other serious incidents. And because the city has failed to
notify homes of the results of its investigations, "corrective actions were
never discussed, let alone implemented or evaluated," Jones wrote. 

The Washington Post requested copies of group home death investigations
done in recent years, with the identities of the deceased deleted. The city
rejected the request, citing confidentiality concerns. In January, The Post
filed suit under the Freedom of Information Act seeking the materials.
Thompson said she reestablished an internal mortality review panel in
November that is sharing the results of death investigations with
providers. The Justice Department, a plaintiff in the long-running
litigation, said in a court filing this week that high turnover in the
deputy mayor's post has hampered the city's ability to deal with the
court's concerns. Walker is the third person in the job since January 2004.

"The focus too often is on meetings and plans and paper, rather than on
whether or not [the mentally disabled] are safe and actually provided with
adequate and effective health care and other critical services," Justice
officials wrote.
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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
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Mark all that apply:
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THANK YOU!
Contact Tamie Hopp at vor@compuserve.com or 605-399-1624 with any
questions. 
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