|
 Health Care
Reform:
What’s at Stake for People with Intellectual
and Developmental Disabilities?
The Case for Health Care
Reform
There is a
broad consensus that America’s health care system needs reform.
Health care spending doubled from 1996 to 2006, reaching $2.2
trillion in 2007, nearly double the average of other developed
countries. Yet, over 46 million Americans are uninsured and we have
poorer health outcomes than other industrialized
countries.
During a White House Health Reform Summit in
March, President Obama stated that health care reform is essential to
achieving economic recovery. Summit attendees, including Republican
and Democratic Members of Congress, the insurance industry, health care
providers, and consumer groups (including The Arc and UCP), agreed that
achieving health care reform this year is a necessary and bipartisan
priority.
All stakeholders agree that reform must provide
affordable coverage, improve quality and lower costs. To achieve these
goals, emphasis has been given to prevention to transform our health care
system’s focus from sickness to wellness, care coordination, chronic
disease management, and shifting payment rates to focus on performance
rather than services provided.
Why is Health Care Reform so Important to
People with Intellectual and Developmental
Disabilities?
Choice of Setting.
Medicaid is the largest program that provides health care and long
term services and supports for persons with disabilities. Medicaid
has an institutional bias which makes it difficult for persons with
disabilities to receive services in community-based settings rather than
in large congregate settings. Consequently, over 300,000 people with
disabilities are on waiting lists for home and community based long term
services and supports across the country. The average wait is 8-10
years.
Long Term
Care. Our current health care system is
principally designed to meet short term or “acute” care needs. There is a
tremendous gap in long term care (LTC) for the general population,
including people with IDD. Our constituents often need
assistance with activities of daily living throughout their lifetimes,
such as getting dressed, taking medication, preparing meals, and managing
money. Only 3% of Americans have private long term care insurance due
to its high costs and Medicare provides only very limited LTC coverage.
This leaves the overburdened and institutionally biased Medicaid program
as the primary provider of
LTC.
Coverage. Under current law,
private health insurance companies are allowed to exclude persons
with pre-existing conditions from coverage and “cap” lifetime coverage,
policies which disproportionately affect people with
disabilities.
Benefits. People with
disabilities frequently depend on habilitation and rehabilitation services
as well as durable medical equipment, prosthetics, orthotics (DMEPOS) to
maintain and improve function. These services and products must be
included in any new health plans developed as part of health care
reform.
Access to Quality
Care. According to the 2002 U.S. Surgeon
General’s report, Closing the Gap: A National Blue Print to
Improve the Health Care Needs of Persons with Mental Retardation,
our constituents experience poorer health and have less access to
medical care than the general population. Many factors contribute to
this disparity, including difficulty recognizing and communicating health
care needs, the shortage of qualified, trained health care professionals
who are willing to treat people with disabilities; and inaccessible
medical equipment for those with mobility impairments (such as examination
tables and weight scales). In addition, low Medicaid provider
reimbursement rates have been an ongoing cause of inadequate access to
quality health care for individuals with IDD.
What are The Arc and UCP’s Recommendations for
Health Care Reform for People with
IDD?
Earlier this
year, The Arc and UCP developed the following broad recommendations for
health care reform legislation:
- Ensure that the private health insurance
system covers ALL Americans so that Medicaid and Medicare are not the
only option for coverage of people with
disabilities;
- Incorporate
long term services and supports by including the CLASS Act and the
Community Choice Act;
- Strengthen the
Medicaid program so that it provides accessible, high-quality health
care services to people with disabilities enrolled in the program;
and
- Increase the
education of physicians and dentists by amending the Public Health
Services Act to require that medical schools, dental schools, and their
residency programs provide training to improve competency and clinical
skills in providing care to patients with disabilities (including those
with intellectual disabilities) as a condition of receiving federal
funds.
The Arc and UCP have since developed very
specific recommendations as part of the Consortium for
Citizens with Disabilities (CCD) , a coalition of over 100 national disability
organizations. Our recommendations have been in
response to the following general options and plans that have been
released to date by key Congressional Committees:
Our highest
priority recommendations include:
Setting
- Allowing states to offer additional services
under the 1915(i) Medicaid Home and Community-Based Services (HCBS)
Waivers State Plan Option.
Long Term Services and
Supports
- Increasing the federal share of Medicaid,
known as the Federal Medical Assistance Percentage (or FMAP) for HCBS
and during periods of economic downturn.
- Strengthening long-term services and supports
through a two pronged approach:
1) Improving the Medicaid
program:
§
The Community Choice
Act would eliminate the institutional bias and
allow a real choice for individuals to receive needed services at home
or in the community by mandating states to cover personal attendant
services.
§
The Empowered at Home
Act would expand
eligibility and asset limits, limit spousal impoverishment, and provide
tax relief to family caregivers.
2) Taking pressure off of the Medicaid
program:
§
The Community Living Assistance Services and
Supports (CLASS) Act would create a national long term services
insurance program which assists eligible individuals and their families
to meet long term needs with a cash benefit and without forcing them
into poverty to receive Medicaid
benefits.
Coverage
-
Prohibiting private health insurance
exclusions for pre-existing conditions.
-
Restricting the consideration of health
status in setting premiums.
-
Expanding Medicaid to cover individuals with
incomes up to 133 percent of the federal poverty line (approximately
$29,000 per year for a family of four).
Benefits
-
Ensuring that minimum covered benefits
include products and services that enable people with disabilities to
maintain and improve function, such as rehabilitation and
habilitation services and durable medical equipment (such as wheelchairs
and augmentative communication devices) and prosthetics and
orthotics.
Access to Quality
Care
-
Requiring training of physicians, dentists,
and allied health professionals on how to treat persons with
disabilities.
-
Integrating health disparities based on
disabilities on the same basis as racial and ethnic disparities in
research and program development.
-
Ensuring prevention programs include a focus
on individuals with disabilities.
-
Increasing reimbursement rates for primary
care services in Medicaid up to Medicare levels, with 100% federal
funding (phased in over several
years).
To read our full set of comments and
recommendations on each plan, click on the links
below:
Expanding Health
Care Coverage: Proposals to Provide Affordable Coverage to All Americans -
Senate Finance Committee
Affordable Health Choices Act - Senate Health
Education Labor and Pensions (HELP)
Committee
Health Reform Draft Discussion Proposal - House
Tri-Committee
What are
the Next Steps for Health Care
Reform?
1) Detailed bills introduced by
Congressional Committees. The House Tri-Committees (Energy
and Commerce, Ways and Means, and Education and Labor) introduced the
America’s Affordable Health Choices Act of 2009 (H.R. 3200) on July 14.
(The Arc and UCP are in the process of reviewing this 1,000-plus
page bill. We will provide details on the bill’s impact on people with
disabilities soon.) The Senate
Finance Committee has not introduced its bill. It hopes to produce a
bi-partisan bill soon.
2) Committee Markups.
Each of the committees involved debates and amends its bill. The
House Tri-committees will each markup their bills separately and then
merge their bills. House markups are expected to be completed in
July and Senate markups by the end of August.
3) Committee Votes.
Committees vote to pass their bills at the end of mark-ups. The
Senate Health, Education, Labor and Pensions (HELP) committee approved its
Affordable Health Choice Act on July 15 with no Republicans voting in
favor. Today, the House Committee on Ways and Means passed its
version of the bill, the America’s Affordable Health Choices Act.
Following the Senate Finance Committee mark-up, the HELP and Finance
Committees will merge their bills before the entire Senate votes.
4) Floor Votes. The bills go
to the full House and Senate for a vote. A final vote in the House of
Representatives is expected in late July. The Senate Majority leadership
is hoping to consider its bill before the August recess – even if the
recess must be delayed. President Obama continues to urge the House and
Senate to vote on their bills before the August
recess.
5) Conference. The House and
Senate resolve any differences between their bills. Conference is
expected to take place in the early fall.
6) Signature by President
Obama. The President has stated his strong desire to have
the bill signed by the end of the year.
What are the Greatest Challenges to Getting
Health Care Reform Enacted This Year?
No substantive overhaul of our health care
system has been achieved over the last 40 years despite several attempts
to do so. The two major current challenges
are:
A public plan. The Congress is divided, largely along
partisan lines, on whether the government should run a public insurance
plan to compete with private plans. (It is important to underscore that no
one will be required, under any health reform proposal, to change their
current health insurance coverage or their medical
providers.)
"Payfors". There are strong divisions about how to pay for
the proposed elements of health care reform.
What Can Chapters of The Arc
and Affiliates of UCP do to Help?
 Tell your stories. Members of Congress and the Obama Administration
frequently use personal stories of Americans’ experiences with the health
care system to garner support for health care reform. Take advantage
of these opportunities to explain the unique and compelling health and
long term care needs of people with
IDD.
 Respond to action alerts. There are still several steps left in the
process. At each juncture, we can have an impact. At present,
The Arc has reason to believe that many of these recommendations will be
included in the committees’ bills.
However, whether final
legislation includes meaningful improvements in health care for people
with IDD will depend, in part, on the active involvement of The Arc’s and
other disability organizations’ networks across the country. There
are hundreds, if not thousands, of powerful constituencies that have a
great stake in health care reform. It is up to us to make sure our
priorities are included.
|