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FEDERAL AND STATE BUDGET UPDATE

1. FEDERAL Budget Update
2. FEDERAL: Comprehensive Entitlement Reform Commission Act of 2005
3. ILLINOIS: Arc of Illinois says "Don't say no to people with disabilities
and the individuals who serve them"
4. UTAH: Can states stretch the Medicaid dollar without passing the buck?
Lessons from Utah
5. FLORIDA: Money to feed disabled kids is cut
6. VIRGINIA:  Fairfax's Ailing Poor Waiting - Seeing Therapists Takes
Months; Housing, Years
7. PLEASE CONTRIBUTE TO VOR TODAY!!
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1. FEDERAL Budget Update
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Source: Families USA, March 17, 2006

Last night the Senate passed its budget resolution for Fiscal 2007 by a
vote of 51 to 49 (S Con Res 83). All Democrats except Senator Landrieu (LA)
were opposed to the budget. All Republicans except Senators Chafee (RI),
Collins (ME), Coleman (MN), DeWine (OH) and Ensign (NV) voted in favor.

There is both good news and bad news to report from the debate. 

GOOD NEWS - 

NO RECONCILIATION INSTRUCTIONS

The Senate rejected a Sen. Cornyn (R-TX) amendment (43 - 57) that would
have inserted reconciliation instructions to the Finance Committee to cut
$10 billion in Medicare.

AN INCREASE IN DISCRETIONARY FUNDING

The Senate voted to increase the total amount available for discretionary
spending - thereby rejecting the President's recommended cap. Senators
voted overwhelmingly for an amendment offered by Specter (R-PA) and Harkin
(D-IA) (73 - 27) that added $7 billion to health, social services,
education and training programs. This amendment would restore funding for
the Labor-HHS-Education subcommittee back to its 2005 level. The Senate
also voted to increase funding for low-income energy assistance by $3.3
billion, bringing it to its fully authorized level. Both these amendments
hand appropriators real money ($$!!) to put towards their programs. These
amendments differ from several others the Senate approved, which claimed to
increase funding in various areas - but did not in fact provide real money.

Inhofe offered an amendment to cap discretionary funding for future years.
This failed by a margin of 35 to 62. Taken together these are victories for
discretionary spending.

BAD NEWS -

The budget resolution increases the deficit and makes room for billions in
new tax cuts. This means there will be no lessening of the pressure to rein
in spending on Medicaid and Medicare in the foreseeable future.

The Senate rejected a bipartisan amendment sponsored by Senators Smith
(R-OR) and Bingaman (D-NM) that would have stripped language related to the
45 percent trigger in Medicare. The amendment failed 50 to 50 - after
Senator Coleman (R-MN) changed his vote from yes to no. The failure of this
amendment means that if general revenues make up at least 45 percent of
Medicare costs in the next two years (as expected), a new Senate rules goes into
effect. A senator could raise a point of order to block legislation that
expands any entitlement program - not just Medicare. It would require 60
votes to over-ride the new point of order. This means any increase in
Social Security, Medicaid, Medicare or CHIP could require the approval of
60 senators.

The Senate also rejected Sen. Conrad's (D-ND) pay-as-you-go amendment that
would have required any new tax cuts to be paid for, by a margin of 50 to
50.

The House is expected to start working on its budget resolution when it
returns after the recess.

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2. FEDERAL: Comprehensive Entitlement Reform Commission Act of 2005
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S. 1889 (Sen. Chuck Hagel (R-NE)) and H.R. 4122 (Rep. John Tanner (D-TN))
call for the establishment of an 8 person Comprehensive Entitlement Reform
Commission "to review Social Security, Medicare, and Medicaid and make
comprehensive recommendations to sustain the solvency and stability of
these three programs for future generations." The members would be
appointed within 30 days of passage; a report would be presented within 60
days of passage. 

3. ILLINOIS: Arc of Illinois says "Don't say no to people with disabilities
and the individuals who serve them"

Summary: The following is a letter from the Arc of Illinois to Illinois'
Governor criticizing the Administration's budget proposal and urging - 
"Don't say no to people with disabilities and the individuals who serve
them."

March 2006

Governor Blagojevich
Springfield, IL 62706

Dear Governor Blagojevich:

The Arc of Illinois represents 200.000 individuals with developmental
disabilities and their families. The Arc appreciates that you included a 3%
cost of doing business for community services this past year. We also
appreciate the good work of Secretary Adams and the staff of the Division
of Developmental Disabilities.

We, however, cannot support this proposed budget. We ask the question, how
could your advisors have been so uninformed to leave out important services
to vulnerable individuals with developmental disabilities? We know your
staff and legislators are now in the process of drafting a new state
budget. The Arc's message to all is, "Don't say no to people with
disabilities and the individuals who serve them."

Governor, we need your advocacy for people with disabilities in the final
state budget and we know we can count on you.

The current budget proposal says "No" to people with disabilities. There
are no funds for the 9,600 people on the waiting list. There is no funding
for a Children with Developmental Disabilities Waiver. There is no cost of
doing business increase for community services.

In addition, the Illinois waiting list identifies 204 caregivers over the
age of 80 and 500 over the age of 70! We know these figures are very low.
Also, there are 1,370 families who identify themselves as being in an
emergency state. Yet there is no new funding for these families in this
proposed budget.

The current budget proposal is a great disappointment to us, but it can be
rewritten. We are asking you and legislators to craft a budget that is fair
to people with disabilities and their families.

Please, don't say no to people with disabilities and the individuals who
support them.

The Arc of Illinois recommends: 

1. 300 New CILA Opportunities
2. 400 New Home-Based Support Service Opportunities
3. 300 New Family Assistance Opportunities
4. A Children's Developmental Disabilities Waiver
5. A 5% Enhancement for Staff Wages, Benefits & Rates

Thank you for your advocacy on the behalf of people with disabilities and
their families. There is still time to "Do The Right Thing."

Sincerely,
Tony Paulauski
Executive Director

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4. UTAH: Can states stretch the Medicaid dollar without passing the buck?
Lessons from Utah
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Source: Kaiser Family Foundation, March 2006

With the recent enactment of the Deficit Reduction Act of 2005
(http://www.kff.org/medicaid/7465.cfm) states have gained increased
flexibility over benefits and cost sharing for certain currently eligible
Medicaid populations without having to obtain a waiver of Medicaid rules. 
New findings from the Kaiser Family Foundation's 2004 survey of the
experiences of Medicaid beneficiaries under Utah's 2002 waiver provide
insights into the implications of limited benefits for the low-income
population.  The results are featured in the March/April edition of the
journal Health Affairs.

Can States Stretch the Medicaid Dollar Without Passing the Buck?  Lessons
from Utah (http://www.kff.org/medicaid/kcmu030706pkg.cfm) examines Utah's
experience, noting that it "could prove instructive for understanding the
direction of state waivers and national reforms."  Under a waiver, Utah
expanded coverage for primary care services to low-income uninsured parents
and adults, offsetting costs by limiting benefits and raising cost sharing
for poor parents, most with incomes below 54 percent of the federal poverty
level, already covered by Medicaid.
 
The study suggests that a coverage expansion approach that relies on
savings from reducing coverage for current beneficiaries and provides a
limited benefit has important limitations.  Although the primary care
expansion helped fill a critical need for low-income uninsured adults, more
than three-fourths of primary care enrollees needed services beyond the
scope of their coverage.  Similarly, more than two-thirds of the Medicaid
beneficiaries subject to coverage reductions needed care beyond their
coverage.  The limited coverage or the cost associated with services, led
one in three newly insured people to miss or postpone care and over half
reported difficulty paying for medical expenses.  Among the parents with
coverage reductions, nearly a quarter reported missing or postponing care
and over a third said they had difficulty paying medical expenses.  

A Case Study of the Utah Primary Care Network Waiver:  Insights into its
Development, Design, & Implementation
(http://www.kff.org/medicaid/kcmu030706pkg.cfm) was also released today by
the Foundation's Kaiser Commission on Medicaid and the Uninsured.  The
report examines the creation and implementation of Utah's waiver through
interviews with key stakeholders and an analysis of state enrollment data
and quarterly reports.

For more information on these studies and issues related to Medicaid
waivers, contact us at kcmu@kff.org.

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5. FLORIDA: Money to feed disabled kids is cut
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Summary: Florida's Medicaid agency has cut off payments for nutritional
supplements for severely disabled children, saying it needs to control
costs.

BY CAROL MARBIN MILLER
The Miami Herald

In an effort to save money, Florida Medicaid officials have stopped paying
for the feeding supplements for perhaps thousands of children who suffer
from severe physical disabilities, have HIV or are dependent on kidney
dialysis to survive, healthcare officials say.

Most at risk, doctors say: children with severe disabilities, such as
cerebral palsy, who cannot eat or swallow on their own and receive all
their sustenance from feeding tubes connected directly to their stomachs.

Earlier last week, Gov. Jeb Bush announced in his State of the State
address that a top priority of his last year in office was to return $1.5
billion in tax money to Florida taxpayers. Though some officials at the
state Agency for Health Care Administration, which oversees Medicaid, say
the changes were not designed to save money, an email from an AHCA
official, obtained last week by The Miami Herald, says otherwise.

''We've made many policies more restrictive than in the past, due to the
out-of-control costs of Medicaid,'' Emily Fritz, Medicaid's community
relations director, wrote earlier last week to a University of Miami
dietitian, explaining the decision to dramatically curtail the number of
children for whom the state subsidizes supplements. ''It was a tough, but
necessary, decision,'' she added.

It's not immediately clear how many children may be affected by the policy
change or precisely how much the state expects to save.

But doctors and dietitians who treat disabled and medically fragile
children call it a ''dangerous'' decision.

''It frightens me to think what can happen,'' said Sheah Rarback, director
of nutrition at Miami's Mailman Center for Child Development, which
provides care to hundreds of children with developmental disabilities and
neurological disorders, such as cerebral palsy and mental retardation.

''Of course, there can be serious medical consequences -- even
life-threatening,'' said Dr. John Thompson, director of pediatric
gastroenterology at the University of Miami School of Medicine. 

``I'm sure this could become a life-threatening situation if a child is
becoming malnourished.''
AHCA Secretary Alan Levine told The Miami Herald late Friday he was unaware
of some of the recent changes, and will be reviewing the new policies to
see whether there is any potential for harm to children.

''This is the first I've heard of this,'' Levine said. ``No one has called
our office to complain or bring it to our attention.''

Levine called it ''absolutely unacceptable'' if Medicaid claims for
necessary food supplements are being wrongly rejected by the agency. ''If
it can be documented that an item is medically necessary, it will be
approved,'' Levine said. ``All they have to do is get it authorized.''

Levine said he was directing his staff to talk to doctors whose patients
cannot get needed formula, ``hear what their clinical issues are, and make
a determination, based on their input, as to whether the policy needs to be
changed or not.''

He added: ``When it comes to children, if something is medically necessary,
we need to provide it and we will. . . . Trust me when I say this:
particularly when it relates to children, we take this very seriously.''

The new policies already may have harmed a child.

A 12-year-old Miami girl who receives care from the University of Miami was
hospitalized recently after Medicaid refused to continue paying for her
formula and she became seriously malnourished. The girl, who suffers from a
form of muscular dystrophy, cannot eat enough food to sustain her growth,
said dietitian Clara St. Thomas.

''We did everything we were supposed to do. We jumped through every hoop.
And we were still denied,'' said St. Thomas, who added the teen depends
upon liquid supplements for virtually all her nutrition.

''She couldn't get enough calories, and she got sick,'' St. Thomas said.
The girl's doctor was calling the nutrition department demanding to know:
''What's going on? Why can't this child get her milk?,'' St. Thomas said.

Laura Martinez, who adopted her 7-year-old son, Prince, from foster care,
is worried about her ability to feed her child as well.

Prince was born with severe cerebral palsy, the result of brain damage at
birth, Martinez said. She raised the boy as a foster child after his birth
parents neglected him, then adopted him two years ago. She feeds him
through a gastrostomy tube, or G-tube, connected to his stomach.
Prince originally was fed an expensive formula called Peptomin Jr. until
the state refused to pay for it. When she shifted to another supplement,
called Pediasure, which can cost as much as $15 for a six-pack of cans,
Medicaid officials refused to pay for that as well, Martinez said.

''We can't seem to get the food we need, and it's so expensive,'' Martinez
said.

Nutritionists at both the University of Miami and All Children's Hospital
in St. Petersburg say the Medicaid changes began last summer, but some of
them did not affect some patients until the beginning of this year, when
doctors began renewing prescriptions for the expensive formulas patients
use.

Navigating through the changes was maddening, the healthcare officials
said.

Pat Hare, director of nutrition services at All Children's, which serves
children in clinics throughout much of Central Florida, said Medicaid
officials never told the hospital that they were changing forms and
policies. Officials discovered the problems when reimbursement forms were
returned stamped ``denied.''

Dr. Gwen Wurm, director of community pediatrics at the University of Miami,
said she called the state Medicaid office in Tallahassee herself and asked
officials to explain to her how to fill out the prescription forms so they
won't be rejected. ''They tell you they won't answer questions about it,''
Wurm said. ''I fill out the forms, and they get rejected,'' added Wurm, who
called the Medicaid changes ``unconscionable and cruel.''

Said Ann-Britt Bennett, a nurse practitioner at the University of Miami's
gastroenterology practice: ``You cannot talk to these people. They do not
talk on the phone. . . . This is really hurting the poorest people in our
community.''

Some UM officials were told by Medicaid to instruct patients to
''blenderize'' table food so that it somehow can be poured into patients'
G-tubes, Wurm said. But doctors are rejecting the idea as misguided and
potentially dangerous.

For one thing, Thompson said, he doubts the parents of most patients will
be able to fashion a blended diet with enough nutrition for patients who
already are fragile. But there's also the risk that such food will clog up
or infect feeding tubes, resulting in even greater problems.

''My biggest concern is that some families aren't going to be able to
afford enough formula, so they will just limit the amount of food they give
their child,'' Wurm said. ``It's just a mystery to me why they are doing
this. There is too much potential for problems.''

Hare, at All Children's, said she also is concerned about several Central
Florida children -- she doesn't know exactly how many -- with HIV and AIDS
who depend upon nutritional supplements to stave off a complication called
HIV wasting, a form of malnutrition. Medicaid has rejected many such
claims, saying the children can be fed other ways.

''It seems like all our patients are getting denied,'' she quoted the
clinic's director as saying.

Hare also worries about a number of children on dialysis who have been
denied formula. ''These kids just don't eat,'' Hare said. ``Growth failure
is just one of the complications. A lot of these kids have gastrostomy
tubes. We've never had a problem before getting them covered.''

For several patients, doctors and nutritionists have submitted Medicaid
forms over and over and over again, only to see them repeatedly returned
with a ''rejected'' stamp, the healthcare officials say.

''It seems pretty clear this is a cost-saving measure that will have a
significant negative impact on the health of the children we take care
of,'' said UM's Thompson.

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6. VIRGINIA:  Fairfax's Ailing Poor Waiting - Seeing Therapists Takes
Months; Housing, Years
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Summary: If you are poor and mentally ill in Fairfax County, it can take
you as long as six months to see a therapist. If you need a place in a
group home, you could be waiting for years. Those bleak assessments come
from the Fairfax-Falls Church Community Services Board, an agency that
operates mental health, mental retardation and substance abuse programs for
the county on a $149 million budget. Driving the prolonged waits for
service are staff shortages and caseloads that are growing in volume and in
the complexity of the problems patients present, according to agency
officials, who delivered their annual report to the Board of Supervisors
this week. "We're in bad shape," John DeFee, director of mental health
services, told supervisors.

By Bill Turque
© 2006 The Washington Post Company
Friday, March 17, 2006

Long waits for social services are a chronic problem for local governments.
While Fairfax enjoys a reputation for efficient delivery of services, aid
to those with the most acute needs, such as the homeless and the mentally
disabled, has lagged. The sheer size of the county's population -- slightly
more than 1 million -- and rapid growth have compounded those challenges.

As of March 1, according to agency records, 173 people were awaiting
initial screening by therapists, and they might not see therapists for as
long as six months. Once they have received diagnoses, patients can wait
again, anywhere from two weeks to two months for placement in adult
outpatient programs.

More than 660 people are seeking temporary or permanent spaces in group
homes, where a wait for 
one of the 575 beds can run from eight to 10 months to "literally years,"
depending on the length of the stay, DeFee said.

"Quite frankly, it depends on whether someone moves out or passes away," he
added.

The mentally ill aren't the only county residents struggling for access.
Agency waiting lists show 344 adults seeking alcohol or drug treatment. The
average wait is described as "variable."

Supervisors expressed dismay about the waiting periods and gave the
Community Services Board 90 days to devise a plan to address the issue.

"I shudder to think that someone might have to wait six months for a
diagnosis," said Supervisor Penelope A. Gross (D-Mason). Fairfax County
provides about 55 percent of the agency's budget; Medicaid pays 22 percent.
Advocates have long criticized the state's level of funding, which  was 12
percent last year.

Dotti McKee, a Fairfax resident and advocate for the mentally ill whose
36-year-old son is severely mentally disabled, called the county's system
"a nightmare." When her son was released from a state mental hospital this
year, she was told it would be two years before the county could place him
in a group home, she said. In the interim, she has found him rooms in
private homes that she said are ill-suited to his needs. Once a month, he
sees a county therapist for 30 minutes.

"The help is just not there," McKee said.

Agency officials say they are dealing increasingly with patients whose
multiple medical problems and personal circumstances -- combinations of
mental illness, substance addiction, poverty and homelessness, for example
-- pose special challenges.

More than 83 percent of the 11,000 people who received mental health care
last year have annual 
household incomes below $25,000. Most are either uninsured or underinsured.

Perhaps more vexing have been staffing problems. The agency's outpatient
treatment centers in Reston, Alexandria and Annandale have a total of 11
vacancies for psychotherapists, case managers 
and nurses. Even before the vacancies emerged last year, therapists were
oversubscribed, DeFee  said, each carrying an average of 50 cases. That
workload has expanded.

Although some agency staff members are among the county's highest paid
employees (one psychiatrist made $286,886 with overtime in 2003, according
to a Washington Post study of area government salaries), DeFee said
recruitment and retention are increasingly difficult. Competition from the
private sector and other government agencies, as well as the expense of
living in Fairfax, are the main obstacles.

Other jurisdictions face similar problems, but to a lesser degree. Loudoun
County, which serves about 2,000 mental health patients a year, had 45
adults seeking outpatient care as of March 7. The 
average wait is 33 days, although some patients have encountered delays of
up to three months. 

Tom Maynard, Loudoun's director of Mental Health, Mental Retardation and
Substance Abuse Services, said that the waits have been "a chronic
difficulty" but that his agency tries to get everyone evaluated and into
treatment within a month.

"It's been a mighty struggle," he said.

Montgomery County, which contracts nearly all of its mental health services
to a network of nonprofit organizations, had no immediately available
information on waits. However, a November 2004 county report said 140
people were on waiting lists.

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