HAPPY NEW YEAR!!!
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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
January 5, 2007
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1. National Council on Disability Congressional Outreach
2. The Combating Autism Act of 2006 passes Congress and is signed by
President
3. President Signs Critical Respite Bill for Family Caregivers - The
Lifespan Respite Care Act of 2006 (HR 3248) is now law
4. Congress Extends Mental Health Parity Provision for Additional Year
5. CMS Publishes Final Patients' Rights Rule on Use of Restraints and
Seclusion - Better, More Extensive Training of Staff Required
6. Aging and Disabilty Resource Center Grants Announced
7. 2005 Census Data Regarding People With Disabilities
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1. National Council on Disability Congressional Outreach
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On December 11, NCD published the first of a number of upcoming monthly
two-page briefings for Congress, highlighting major points in the NCD
report The State of 21st Century Long-Term Services and Supports: Financing
and Systems Reform for Americans with Disabilities
(www.ncd.gov/newsroom/publications/2005/longterm_services.htm).
NCD undertook research for this report because it has grown increasingly
concerned about (a) the lack of a coherent national policy for long-term
services and supports (LTSS) for all people with disabilities; (b) the
fragmented nature of service and support delivery systems, with uneven
access and service provision; and (c) LTSS costs of 22 percent or more of
state budgets, which are fast becoming unsustainable. Additionally, NCD
noted that no single federal program, federal agency, or congressional
committee is charged with the responsibility for the management, funding,
and oversight of LTSS; however, 23 federal agencies are actively involved
in LTSS using the NCD definition.
The purpose of this research is to produce new knowledge and an
understanding of current experience with LTSS and the future need for
affordable LTSS for people with disabilities. On December 18, NCD notified
members of the House Livable Communities Task Force and the Senate Special
Committee on Aging about the release of the NCD report Creating Livable
Communities, available at
www.ncd.gov/newsroom/publications/2006/livable_communities.htm.
The report identifies a number of strategies that can be applied to the
design and support of livable community principles. The strategies have
been initiated by federal and state government agencies as well as the
private sector. These entities have recognized the power of collaboration
and the use of distinct tools to guide and stimulate systemic changes to
make communities more livable for all.
The letters to Congress can be found at
www.ncd.gov/newsroom/correspondence/2006/blumenauer_12-18-06.htm and
www.ncd.gov/newsroom/correspondence/2006/smith_12-18-06.htm.
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2. The Combating Autism Act of 2006 passes Congress and is signed by
President
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THE WHITE HOUSE
OFFICE OF THE PRESS SECRETARY
December 19, 2006
STATEMENT BY THE PRESIDENT
For the millions of Americans whose lives are affected by autism, today is
a day of hope. The Combating Autism Act of 2006 will increase public
awareness about this disorder and provide enhanced federal support for
autism research and treatment. By creating a national education program
for doctors and the public about autism, this legislation will help more
people recognize the symptoms of autism. This will lead to early
identification and intervention, which is critical for children with
autism. I am proud to sign this bill into law and confident that it will
serve as an important foundation for our Nation's efforts to find a cure
for autism.
FACT SHEET
COMBATING AUTISM ACT
December 19, 2006
Today, President Bush Signed The Combating Autism Act Of 2006. This Act
authorizes expanded activities related to autism research, prevention, and
treatment through FY 2011. There are more than 1.5 million cases of autism
in the United States.
* Since the President Took office, National Institutes Of Health (NIH)
Funding For Autism-Related Research Has Increased By Over 80 Percent - From
$56 Million In FY 2001 To An Estimated $101 Million In The FY 2007 Budget,
Including Support For Autism Centers of Excellence. In addition, the
Budget includes approximately $15 million at the Centers for Disease
Control and Prevention (CDC) for autism surveillance and research,
including five regional Centers of Excellence for Autism and Developmental
Disabilities Research and Epidemiology. In October, CDC initiated a $5.9
million study to help identify factors that may put children at risk for
autism spectrum disorders and other developmental disabilities.
The Combating Autism Act Enhances Research, Surveillance, And Education
Regarding Autism Spectrum Disorder.
* The Act Authorizes Research Under NIH To Address The Entire Scope Of
Autism Spectrum Disorder (ASD). Autism, sometimes called "classical
autism," is the most common condition in a group of developmental disorders
known as the autism spectrum disorders (ASDs). Other ASDs include Asperger
syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive
developmental disorder not otherwise specified (usually referred to as
PDD-NOS).
* The Act Authorizes Regional Centers Of Excellence For Autism
Spectrum Disorder Research And Epidemiology. These Centers collect and
analyze information on the number, incidence, correlates, and causes of ASD
and other developmental disabilities. The Act also authorizes grants to
States for collection, analysis, and dissemination of data related to
autism.
* The Act Authorizes Activities To Increase Public Awareness Of
Autism, Improve The Ability Of Health Care Providers To Use Evidence-Based
Interventions, And Increase Early Screening For Autism. The Act authorizes
the Secretary of Health and Human Services to:
- Provide information and education on ASD and other developmental
disabilities to increase public awareness of developmental milestones;
- Promote research into the development and validation of reliable
screening tools for ASD and other developmental disabilities and
disseminate information regarding those screening tools;
- Promote early screening of individuals at higher risk for ASD and
other developmental disabilities as early as practicable;
- Increase the number of individuals who are able to confirm or
rule out a diagnosis of ASD and other developmental disabilities;
- Increase the number of individuals able to provide evidence-based
interventions for individuals diagnosed with ASD or other developmental
disabilities; and
- Promote the use of evidence-based interventions for individuals
at higher risk for ASD and other developmental disabilities as early as
practicable.
* The Act Calls On The Interagency Autism Coordinating Committee
(IACC) To Enhance Information Sharing. The IACC provides a forum to
facilitate the efficient and effective exchange of information about autism
activities, programs, policies, and research among the Federal government,
several non-profit groups, and the public. The Combating Autism Act
requires the IACC to provide information and recommendations on ASD-related
programs, and to continue its work to develop - and update annually - a
strategic plan for ASD research.
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3. President Signs Critical Respite Bill for Family Caregivers - The
Lifespan Respite Care Act of 2006 (HR 3248) is now law
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National Respite Coalition Press Release
December 21, 2007
Washington, DC (December 21, 2006) - The Lifespan Respite Task Force, a
coalition of over 170 national, state, and local organizations, applauds
the signing of The Lifespan Respite Care Act of 2006 (HR 3248) into law.
The bill was introduced and championed in the US House of Representatives
by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI). A companion bill in
the Senate was cosponsored by Senator Hillary Clinton (D-NY) and Senator
John Warner (R-VA). The Lifespan Respite Task Force includes a diverse
group of national and state organizations: state respite and crisis care
coalitions; health and community social services; disability, mental
health, education, faith, family caregiving and support groups; groups from
the child advocacy and the aging community; and abuse and neglect
prevention groups.
Family caregivers are providing 80% of long-term care in the US, a level of
care valued at $306 billion a year, more than what is spent on nursing home
and paid home care combined. Even though most families take great joy in
providing care to their loved ones so that they can remain at home, the
physical, emotional and financial consequences can be overwhelming without
some support, such as respite. Respite provides the much needed temporary
break from the often exhausting challenges imposed by constant caregiving.
The new law would authorize $289 million over five years for state grants
to develop Lifespan Respite Programs to help families access quality,
affordable respite care. Lifespan respite programs are defined in the Act
"as coordinated systems of accessible, community-based respite care
services for family caregivers of children and adults with special needs."
Specifically, the law authorizes funds for:
* development of state and local lifespan respite programs;
* planned or emergency respite care services;
* training and recruitment of respite care workers and volunteers; and
* caregiver training.
When the bill passed the House, Rep. Ferguson, whose own father was a
caregiver for his ill mother for 6 years said, "Today's action by the House
of Representatives represents not only an important victory for family
caregivers nationwide, but it also sends America's caregivers a clear
message: Your selfless sacrifice is appreciated, and help is on the way."
"On behalf of over nation's family caregivers who desire to keep their
loved ones at home despite limited support, we commend Rep. Ferguson,
Vice-chair of the Health Subcommittee of the House Energy and Commerce
Committee, Rep. Langevin, and Senator Hillary Clinton (D-NY) and Senator
Warner (R-VA) for their leadership, and especially want to thank them,
their colleagues from both sides of the aisle, and the White House for
taking action to help the burgeoning numbers of family caregivers," said
Jill Kagan, Chair of the National Respite Coalition, and facilitator of the
Lifespan Respite Task Force. "Relatively minimal investments in respite
help family caregivers provide this care at home and in the community. At a
time when federal and state fiscal resources are limited, this is the most
compassionate and fiscally responsible thing we can do, and a most welcome
gift in this holiday season."
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4. Congress Extends Mental Health Parity Provision for Additional Year
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Source: Bureau of National Affairs (BNA)
Before adjourning for the year earlier this month, Congress passed a
provision in the omnibus tax extenders legislation (H.R. 6111) to extend
current mental health parity law until the end of 2007.
Under the provision, group health plans that provide medical and surgical
care as well as mental health care would be barred from imposing coverage
limits on mental health care that are not in place for other medical
coverage. The provision would impose a $100 fine per day for violations.
The provision would cost $35 million over five years, according to a
summary of the bill provided by the Senate Finance Committee. The House
approved the measure, the Tax Relief and Health Care Act of 2006, Dec. 8;
the Senate followed suit the following day.
Legislation approved in 1996 requires group health plans that offer mental
health benefits to set the same annual and lifetime caps on mental health
coverage as for other medical/surgical services.
Mental health advocacy groups said the 1996 law has loopholes that need to
be closed by barring group health plans from requiring higher copayments,
deductibles, and coinsurance payments for mental health services, compared
to other health benefits. Groups such as the American Psychiatric
Association have criticized Congress for merely passing extensions of the
current law, rather than addressing the cost-sharing issues.
Employer groups have countered that passing more sweeping mental health
parity legislation would increase health care costs for businesses.
Pamela Greenberg, chairwoman of the Coalition for Fairness in Mental
Illness Coverage, which is comprised of provider and consumer associations,
told BNA Dec. 19 that the coalition is pleased Congress extended the
current law, but said broader changes are needed to put mental health care
coverage on a par with other health care coverage.
With Democrats in control of both the House and Senate for the 110th
Congress, Greenberg said she is "very positive" the incoming Congress will
pass mental health parity legislation, and is hopeful Bush would sign such
a bill.
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5. CMS Publishes Final Patients' Rights Rule on Use of Restraints and
Seclusion - Better, More Extensive Training of Staff Required
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Source: CMS
December 2006
Health care workers who employ physical restraints and seclusion when
treating patients must undergo new, more rigorous training to assure the
appropriateness of the treatment and to protect patient rights, according
to a regulation published in the Federal Register today by the Centers for
Medicare & Medicaid Services (CMS).
The patients' rights regulations set forth, as a condition of participation
(CoP) in the Medicare and Medicaid programs, the expectation that health
care facilities will protect the rights of patients. These protections are
part of Medicare's revised CoP requirements that hospitals must meet. The
requirements apply to all participating hospitals including short-term,
psychiatric, rehabilitation, long-term, children's and alcohol/drug
treatment facilities.
"Through this regulation, CMS will hold all hospitals accountable for the
appropriate use of restraint and seclusion," said Leslie V. Norwalk, acting
administrator of CMS. "Today's action reinforces this administration's
commitment to patient safety and the delivery of high quality health care
services."
"These new rules demonstrate our commitment to advancing patient safety and
patient rights in health care facilities," said Eric B. Broderick, D.D.S.,
M.P.H., Acting Deputy Administration at HHS' Substance Abuse and Mental
Health Services Administration. "Today we are taking needed steps to
solidify training requirements and essential reporting to reduce and
ultimately eliminate seclusion and restraints."
To address concerns about the improper use of restraints and seclusion and
in response to the 4,000 public comments received on the interim final
rule, the final regulation strengthens the staff training standard and
specifies components of the training. The rule also expands the category of
practitioners who may conduct patient evaluations when a restraint or
seclusion tactic has been implemented.
CMS currently requires that a patient be evaluated "face-to-face" within an
hour of a patient being restrained or secluded for the management of
violent or self-destructive behavior. Prior to this rule, these actions had
to be reviewed within that hour by a physician or "other licensed
independent practitioner (LIP)." Today's action expands that list to
include a trained registered nurse (RN) or physician assistant (PA). The
rule requires, however, that when an RN or PA performs the 1-hour-rule
evaluation, the physician or other LIP treating that patient be consulted
as soon as possible.
The basic rights specified in the regulation include a patient's right to
notification of his or her rights in regard to their care, privacy and
safety, confidentiality of their records, and freedom from the
inappropriate use of all restraints and seclusion, in all hospital
settings.
In the development of this final rule, CMS has been sensitive and
responsive to the comments of the provider communities, protection and
advocacy associations, private citizens, and the health care community in
general. The intent of this regulation is to ensure the protection of each
patient's physical and emotional health and safety. In this final rule, CMS
has addressed public comments without compromising these protections.
Under the new regulations, hospitals must provide the patient or family
member with a formal notice of their rights at the time of admission. These
rights include freedom from restraints and seclusion in any form when used
as a means of coercion, discipline, convenience for the staff, or
retaliation.
Stricter standards for when a healthcare facility must report the death of
a patient associated with the use of restraints and seclusion have also
been adopted with this rule.
The regulation is in today's Federal Register and will become effective on
February 06, 2007.
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6. Aging and Disabilty Resource Center Grants Announced
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Date: September 27, 2006
Contact: Administration on Aging Press Office
HHS Announces Efforts to Expand and Streamline Access To Long-Term Care in
Communities through Grants to States
HHS Secretary Mike Leavitt today announced nearly $6 million in additional
funding to 22 states to expand their efforts to establish single entry
points to long-term care for families who are trying to learn about and
access services in their communities. These Aging and Disability Resource
Center (ADRC) grants are part of the President's New Freedom Initiative and
the Administration's commitment to bring transparency to health and
long-term care so consumers can make informed decisions about their care
options.
"The President has directed us to tear down the barriers that make it
difficult for people who need long-term care to remain in the community,"
Secretary Leavitt said. "By bolstering the resource centers through these
grants, states can better serve families making effective long-term care
decisions for a loved one, often with little time to prepare."
To date, 43 states have received over $40 million in support under the ADRC
initiative, which is jointly administered by the Administration on Aging
(AoA) and the Centers for Medicare & Medicaid Services (CMS).
States are using ADRC funds to better coordinate and redesign their
existing methods for providing seniors, younger people with disabilities,
and family caregivers with information and personalized assistance in
accessing services such as meals-on-wheels, personal care, housekeeping,
specialized transportation, assisted living and nursing home care.
"We are very pleased with the advancements states have made over the past
three years to simplify access to long-term care for the elderly and adults
with disabilities through the ADRC initiative," said HHS Assistant
Secretary for Aging Josefina G. Carbonell. "These resource centers have
become visible and trusted places for information on long-term care
options, and we are pleased to be able to assist states in furthering their
efforts to make the ADRC the foundation for community-based care."
ADRC accomplishments to date include: creating public Web sites that give
consumers easy access to information on the specific services available in
their communities; co-locating staff from different agencies in a single
location; and using computerized information systems to assess the needs of
clients, activate the delivery of services, and monitor quality. ADRCs are
also working with hospitals and nursing homes to help consumers avoid
unnecessary placement in institutional settings. All ADRC grantees plan for
eventual statewide coverage, and eight states are already positioned to
achieve statewide coverage within three years.
"Providing people who have chronic care needs with personalized information
and assistance so they can fully understand their options is essential to
the transformation of our nation's health and long-term care system," said
[former] CMS Administration Mark B. McClellan, M.D., Ph.D. "Aging and
Disability Resources Centers are putting consumers in the driver's seat
when it comes to making decisions about long-term care. These centers are
also helping Medicare beneficiaries learn about and access their new
prescription drug coverage and other preventive health benefits under
Medicare."
For more information on the ADRC grant program, go to the AoA Web site at
http://www.aoa.gov, the CMS website at
http://www.cms.hhs.gov/newfreedom/default.asp, or the Aging and Disability
Resource Center Technical Assistance Exchange at http://www.adrc-tae.org.
The grants are listed below:
Aging and Disability Resource Center Grant Program Fiscal Year 2006
Continuation Awards
Louisiana - Governor's Office of Elderly Affairs $400,000
Maine - DHHS Office of Elder Services $399,940
Maryland - Department of Aging $400,000
Massachusetts - Executive Office of Elder Affairs $399,976
Minnesota - Board on Aging $400,000
Montana - DPHHS Senior and LTC Services $400,000
New Hampshire - University of New Hampshire $399,261
New Jersey - Department of Health & Senior Services $400,000
Pennsylvania - Office of Healthcare Reform $396,400
Rhode Island - Department of Elderly Affairs $400,000
South Carolina - Lieutenant Governor's Office on Aging $400,000
West Virginia - Bureau of Senior Services $400,000
Aging and Disability Resource Center Grant Program Fiscal Year 2006
Supplemental Awards
Arkansas - Arkansas DHS Div. of Aging & Adult Services $85,000
California - California Department of Aging $85,000
Florida - Florida Department of Elder Affairs $85,000
Georgia - Georgia Division of Aging Services $85,000
Illinois - Illinois Department on Aging $85,000
Indiana - Indiana Division of Disability, Aging and Rehabilitative Services
$84,744
Iowa - Iowa Department of Elder Affairs $83,724
New Mexico - New Mexico Aging and Long-Term Care Dept. $85,000
North Carolina North Carolina DHHS Office of Long Term Care $85,000
Wisconsin - Wisconsin Dept. of Health & Family Services $85,000
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7. 2005 Census Data Regarding People With Disabilities
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Information Bulletin #186 (12/06)
Steve Gold
Many disability advocates need up to date statistics by State or county for
people with disabilities. The 2005 American Community Survey which can be
found at http://factfinder.census.gov and provides a lot of useful current
data. Here is a national summary of the data:
* Nearly 15% of the population 5 years and over (i.e., 40 million people)
have one or more disabilities.
* For the population 16-64 years, 12% of that population (i.e., nearly 23
million people) have one or more disabilities. Of all people 16-64 years,
nearly 3% have a sensory disability, more than 7% have a physical
disability, and 4.5% have a mental disability. [Remember people can have
more than one type of disability and show up in two categories.]
* For the population 16-64 years, only 37.5% of the people with a
disability are employed. That is, more than 14 million people with
disabilities who are unemployed.
* For the population 65 years and over, 40.5% of that population (i.e.,
more than 14 million people) have one or more disabilities. Of all people
over 65years, 16% have a sensory disability, 31% have physical disability,
11.5% have a mental disability, nearly 10% have a self-care disability, and
16.6% have a "go-outside-home disabi
lity."
* For the population 5 years and over who have one or more disabilities,
21.1% are below the poverty level (which is about $9,200 for a single
person). That is, more than 8 million persons have a disability and are
below the poverty level. Of all people 5 years and over who are below the
poverty level, 18.7% have a sensory disability, 21% have a physical
disability, and 26.4% have a mental disability.
* As a comparison, for the population 5 years and over with no disability,
11.3% are below the poverty level, while for the same age group with one or
more disabilities, 21.1% are below the poverty level.
This data is available by State and county at the above Census Bureau's web
site.
Tamie Hopp
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