UNITED SPINAL ASSOCIATION for UNITED SPINAL ASSOCIATION

Health Issues HCR

Health care reform and issues in both health care reform and independent legislation. See following page. See also Medicare and Medicaid. Support comprehensive health care reform legislation (Patient Protection and Affordable Care Act, HR 3590 and Health Care & Education Reconciliation Act of 201, HR 4872) and the related goals of reducing costs, improving quality and expanding health care coverage for Americans with disabilities and chronic conditions and all Americans (including those who lack health insurance). Issues with asterisks * indicate legislation pursued both as part of health care reform and independently. Issues include: Provide for health coverage that adequately meets the needs of people with disabilities and chronic conditions including -- Covering durable medical equipment, prosthetics and orthotics (DMEPOS) including but not limited to power wheelchairs that meet the individual needs of people with disabilities and chronic conditions, enable them to be as independent as possible, to live in their homes and participate in their communities, and enable them to be employed without fear of losing health care/services and supports they need. This includes retaining the first month purchase option for people who have permanent or long-term need for power wheelchairs and including DMEPOS as covered in essential health insurance benefits; delaying CMS competitive bidding program; and having DMEPOS included as essential benefits in health insurance coverage. Providing insurance market reforms, such as those included in House and/or Senate bills, that could greatly improve the lives of people with disabilities and chronic conditions by allowing increased access to health care, such as: --Requiring health insurers to provide the same coverage, charge the same premiums and renew policies to people no matter what their disability or other pre-existing or newly acquired conditions. Currently, unless they have employer-sponsored plans, people with disabilities are often denied coverage altogether, the policies exclude needed services or the premiums are way too costly. --Prohibiting annual and lifetime caps on coverage. People with serious injuries or conditions often quickly exceed these caps due to lengthy hospital stays and/or extensive rehabilitation -- Requiring health insurance to cover rehabilitation and habilitative services. -- Providing for a temporary high risk pool through which people with disabilities and other pre-existing conditions may obtain health insurance pending full implementation of health insurance market reforms. Concerns about the proposed excise tax on medical devices -- that an excise tax on manufacturers would increase their costs which are likely to be passed on to consumers, resulting in increased costs for medical equipment for people with disabilities and chronic conditions who depend on them. Providing for prevention and wellness including --Developing standards for accessible medical equipment; --Authorizing funds to establish a Prevention and Public Health Investment Fund; --Providing for community Transformation Grants that include focus on the needs of people with disabilities; -- Including disability status within data collection on health disparities; -- Proving training programs for primary care providers and dentistry professionals on how to treat individuals with disabilities; Concerns about well-intended wellness provisions that reward people for meeting health standards set by employers and insurance companies with potentially serious unintended onsequences that people with disabilities or other chronic conditions will be unable to meet the health or participation standards because of a limitation, and consequently they would have to pay more for their health coverage, including but not limited to higher deductibles, than people without disabilities or chronic conditions. Providing for comparative effectiveness research and using the resulting information in a way that respects that what works for many people will not work for all; Providing for home and community-based services and supports for people with disabilities and chronic conditions such as Community Living Assistance and Supports (CLASS) provisions* and the Community First ChoiceOption in health care reform. Support increasing Medicaid elibility to a nationwide standard for those whose incomes are up to 133% of the Federal Poverty Level. Since many people with disabilities have low incomes, this would extend Medicaid coverage to many people with disabilities, including childless adults. - Support elimination of Medicare Part D coverage gap (Part D "donut hole") and immediate $250 rebate for beneficiaries who fall into donut hole in 2010. continued next page Note -- Asterisk * indicates issue pursued both independently and as part of health care reform. CLASS Act* -- S. 697/H.R. 1721 included in HR 3590 (Senate health care reform bill) and HR 3962 (House health care reform bill) . Support legislation to establish a voluntary payroll deduction insurance plan so that people with disabilities will be able to pay for assistance with activities of daily living. This would enable them to remain in their homes and off of the Medicaid program. CBO estimates that the CLASS provisions will save Medicaid $2.5 billion in the first 10 years alone. Community Choice Act* (S. 683/H.R. 1670). Support legislation to make services in the home and community the norm under Medicaid - enabling people to stay in their homes and remain part of their communities rather than having to go into nursing homes or other institutions to receive needed services. Became Community First Choice Option in health care reform bills. End Medicares 24-month waiting period* - S 700/HR 1708. Support legislation to end the waiting period for Medicare for people who qualify for Title II Social Security disability benefits and people with life-threatening conditions. Comparative Effectiveness Research HR 2502/S 1213* Support legislation to create non-government independent entities to study the comparative effectiveness of treatments in health care. Mental Illness Chronic Care Improvement (MICCI) Act, S 1136* Support legislation to facilitate access to needed medical services. Amend the Medicare Savings Programs and the Low Income Subsidy* to align, simplify and increase income eligibility, eliminate or substantially increase asset limits, stabilize the programs and make administrative simplifications. First month purchase option* Advocated to maintain the current ability for Medicare beneficiaries to purchase their power wheelchair in the first month of use. Both the House and Senate included language in health reform that would require a beneficiary to rent a power wheelchair for 13 months before purchase. Supported inclusion in HR 3590 and HR 3962 of provisions to exempt Class III and higher power wheel chairs from the rental period and to retain the first-month purchase option under existing law. Community First Choice Option* would allow states to create Medicaid plans that would reverse the institutional bias in Medicaid. The option would provide a 6% increase in FMAP matching funds to states. Supported H.R.2575 to provide parity under group health plans and group health insurance coverage in the provision of benefits for prosthetic devices and orthotics devices, components and benefits for other medical and surgical services. See also Medicare and Medicaid.

Contacted: Veterans Affairs, Dept of (VA); AMTRAK - Natl Railroad Passenger Corporation; HOUSE OF REPRESENTATIVES; Centers For Medicare and Medicaid Services (CMS); Health & Human Services, Dept of (HHS); Social Security Administration (SSA); Labor, Dept of (DOL); Executive Office of the President (EOP); SENATE

Bills named: H.R. 1708 (111th), H.R. 2575 (111th), H.R. 1670 (111th), H.R. 2502 (111th), H.R. 1721 (111th), H.R. 4872 (111th), H.R. 3962 (111th), S. 697 (111th), H.R. 3590 (111th), S. 683 (111th)

Insurance INS

Community Living Assistance and Supports Act (CLASS Act) to create a national insurance program financed by voluntary payroll deductions to provide services to assist people with activities of daily living in order to stay in their homes and communities if they become disabled. People would not be required to qualify for Medicaid or go into a nursing home or other institution in order to receive benefits. In health care reform HR 3590. Advocated for health insurance parity for coverage of prosthetic and orthotics devices, components and benefits for other medical and surgical services: under ERISA and HR 2575 for group health plans and group health insurance Social Security: HR 1093 regarding fee caps to help make sure that attorneysand others representing Social Security disability claimants are paid in a timely manner and to index the allowed fees to the Cost of Living Adjustment. H.R. 2829, the Recidivism Reduction Act to expedite reinstatement of Social Security, SSI, and Medicaid benefits for eligible individuals after incarceration HR 3325 to reauthorize through fiscal 2010 the Work Incentives Planning and Assistance program and the Protection and Advocacy for Beneficiaries of Social Security program, both of which provide employment-related services for people with disabilities. These provisions would have expired without reauthorization. Met with senior Senior SSA officials, as well as Senate and House staff regarding policies and possible legislation to expedite obtaining and review of medical records of disability claimants while protecting privacy rights of people with disabilities, electronic filing of disabilty applications and electronic authorizations for SSA to obtain medical records in connection with disabilities claims. - Met with SSA senior staff regarding draft report of SSA's Occupational Information Development Advisory Panel (OIDAP) that recommends dramatically different procedures to determine eligibility fordisability benefits under both Title II and Title XVI programs. -- Commented on on disabilty determinations for people with drug addiction and/or alcoholism. Supported HR 4532 to renew SSAs demonstration authority and to make permanent a successful demonstration that enables both attorneys and non-attorneys (who meet certain qualifications) representing Social Security disability claimants to be paid reasonable fees out of retroactive benefits. This practice enables many claimants (including those with mental illnesses and conditions such as post-traumatic stress disorder) to have good representation rather than to navigate the esoteric and complex application process on their own (often to be denied for procedural rather than substantive reasons). - Supported President's Budget proposal for SSA Limitation on Administrative expenses because the increased funding will help cut the backlog and delays in both the initial and hearing level disability determinations, thus providing disability benefits with less delay to people who meet SSA's strict eligibility requirements.

Contacted: Executive Office of the President (EOP); Labor, Dept of (DOL); HOUSE OF REPRESENTATIVES; Social Security Administration (SSA); AMTRAK - Natl Railroad Passenger Corporation; SENATE; Health & Human Services, Dept of (HHS); Veterans Affairs, Dept of (VA); Centers For Medicare and Medicaid Services (CMS)

Bills named: H.R. 2829 (111th), H.R. 4532 (111th), H.R. 1093 (111th), H.R. 3325 (111th), H.R. 3590 (111th), H.R. 2575 (111th)

Medicare/Medicaid MMM

See next page and see also HCR - Health Care Issues. Medicare/Medicaid Community Choice Act (HR 1670 and S 683) (changed to Community First Choice Option in health reform) Advocated to end the institutional bias in Medicaid. The bill would amend title XIX of the Social Security Act to provide individuals with disabilities and older Americans with equal access to community-based attendant services and supports, and for other purposes. HR 3790 to repeal the Medicare competitive acquisition program for durable medical equipment and prosthetics, orthotics, and supplies (DMEPOS) in a budget neutral manner. Medicare In the Home restriction (HR 3184 and S 1186) - reintroduction of legislation to reverse the CMS rule that Medicare will pay for wheelchairs only as needed in the home rather than as needed for the individual to go to medical appointments, go to the pharmacy and grocery store, attend worship services, accompany children to school and other activities, vote and otherwise be independent and participate in the community. HR 2390, the Guidance, Understanding and Information for Dual Eligibles (GUIDE) Act to provide one-on-one counseling to people with cognitive impairments navigate and protect their rights with regard to the confusing Part D Prescription Drug Benefit Program authorized under the Medicare Modernization Act (MMA) of 2003. S 700/HR 1708 to end the waiting period for Medicare for people who qualify for Title II Social Security disability benefits and people with life-threatening conditions. DME Competitive Bidding - Met with CMS officials to discuss implementation of the DMEPOS competitive bidding program to make the transition as easy as possible for members who are Medicare beneficiaries. S 1630 a bill to amend Medicare to improve prescription drug coverage under Medicare part D and to amend the Public Health Service Act, the Employee Retirement Income Security Act of 1974, and the Internal Revenue Code of 1986 to improve prescription drug coverage under private health insurance Supported HR 3799 that would cap out of pocket prescription costs at a max of $200 per prescription and at $500 total for any group of prescriptions in Medicare Part D. For people with chronic conditions who participate in Medicare Part D the increasing costs of specialty medicines can cause hardships and make access to prescription drugs unattainable. Supported HR 3621, the Medicare Premium Fairness Act, to protect millions of seniors and people with disabilities who receive Social Security benefits from unfair increases in their 2010 Medicare Part B premiums. -- Advocated that Center for Medicare and Medicaid Services (CMS) make Medicare Part D improvements including reassignmentof Low Income Subsity (LIS) recipients who have previously chosen Part D plans based on premium lability, curb waste of unused drugs, address the established price threshold for prescription medications to be included on the Specialty Tier i Part D plans' formularies, address the problems of co-payments and co-insurance and pricing of both specialty tier medications and all medications, create an appeals process for medications placed on specialty tiers, and study the impact of excessive cost-sharing. -- Supported extending the moratorium on Medicare therapy caps. See also Health.

Contacted: Health & Human Services, Dept of (HHS); AMTRAK - Natl Railroad Passenger Corporation; Centers For Medicare and Medicaid Services (CMS); SENATE; Labor, Dept of (DOL); Executive Office of the President (EOP); Veterans Affairs, Dept of (VA); Social Security Administration (SSA); HOUSE OF REPRESENTATIVES

Bills named: H.R. 1708 (111th), H.R. 3184 (111th), H.R. 3621 (111th), H.R. 1670 (111th), H.R. 3790 (111th), H.R. 3799 (111th), H.R. 2390 (111th)

Medical/Disease Research/Clinical Labs MED

Stem Cell Research Improvement Act of 2009 allows for federal funding of embryonic stem cell research provided that certain ethical requirements are met (HR 873 and S 487).

Contacted: AMTRAK - Natl Railroad Passenger Corporation; Centers For Medicare and Medicaid Services (CMS); Veterans Affairs, Dept of (VA); HOUSE OF REPRESENTATIVES; Labor, Dept of (DOL); Health & Human Services, Dept of (HHS); Social Security Administration (SSA); SENATE; Executive Office of the President (EOP)

Bills named: H.R. 873 (111th)

Civil Rights/Civil Liberties CIV

Supported HR 4247 and S 2860 the Preventing Harmful Restraint and Seclusion in Schools Act.

Contacted: Veterans Affairs, Dept of (VA); HOUSE OF REPRESENTATIVES; Executive Office of the President (EOP); AMTRAK - Natl Railroad Passenger Corporation; SENATE; Social Security Administration (SSA); Centers For Medicare and Medicaid Services (CMS); Labor, Dept of (DOL); Health & Human Services, Dept of (HHS)

Bills named: H.R. 4247 (111th)

Defense DEF

National Defense Authorization Act for fiscal year 2011 -- possible amendment concerning benefits available under the ECHO program to military families members who have disabilities.

Contacted: HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS); Social Security Administration (SSA); Centers For Medicare and Medicaid Services (CMS); Executive Office of the President (EOP); Veterans Affairs, Dept of (VA); SENATE; AMTRAK - Natl Railroad Passenger Corporation; Labor, Dept of (DOL)

Taxation/Internal Revenue Code TAX

Support HR 1205/S. 493, the Achieving a Better Life Experience Act of 2009 (ABLE Act). This legislation will allow individuals with disabilities to have access to the same type of savings instruments that other Americans use through the use of 401K, IRA and College Savings Account Families could establish savings accounts for specified education, medical and community-based services, including housing, transportation, employment training, and supports without jeopardizing other benefits vital to beneficiaries.

Contacted: Executive Office of the President (EOP); Labor, Dept of (DOL); SENATE; Centers For Medicare and Medicaid Services (CMS); AMTRAK - Natl Railroad Passenger Corporation; Veterans Affairs, Dept of (VA); HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS); Social Security Administration (SSA)

Bills named: S. 493 (111th), H.R. 1205 (111th)

Veterans VET

See next page. Supported Caregivers and Veterans Omnibus Health Services Act of 2009 (S. 1963)includes funding for family caregivers, improved access to services for women veterans and veterans living in rural areas, and other health matters. S. 1963 includes aspects of the Caregiver Assistance and Resource Enhancement Act (H.R. 3155), Women Veterans Health Care Improvement Act (H.R. 1211), Disabled Veterans Home Improvement and Structural Alteration Grant Increase Act of 2009 (H.R. 1293),and Veterans Nonprofit Research and Education Corporations Enhancement Act of 2009 (H.R. 2770). Supported Veterans Benefits Enhancement Act (H.R. 1037/S. 728)including increasing coverage amount for the Veterans Mortgage Life Insurance program. Met with senior officials of White House Office of Public Engagement and a Legal Advisor to the the National Secuity Council and representatives from veterans service organizations concerning the need to increase employment opportunities for veterans. Supported H.R. 1169would provide a significant increase in the VAs Specially Adapted Housing grant, the Special Home Adaptation grant, and the grant to purchase an automobile. Urged Congress to consider methods for addressing the VA benefits claims processing backlog. Supported the Veterans Training Act (H.R. 3813)would grant veterans access under the Post-9/11 GI Bill to non-degree granting training programs and schools. Supported Surviving Spouses Benefit Improvement Act of 2009 (H.R. 2243)would replace the current rate of VA Dependency and Indemnity Compensation (DIC )with a formula setting the rate of DIC at a rate equal to 55 percent of the rate paid to a veteran with a total disability rating. Supported Military Surviving Spouses Equity Act (H.R. 775 and S. 535)would eliminate the offset to the military Survivor Benefit Plan (SBP) annuities for families who receive VA Dependency and Indemnity Compensation (DIC). Defense Discussed possible amendment to the National Defense Authorization Act for Fiscal Year 2011 concerning benefits available under the ECHO program to military family members who have disabilities.

Contacted: Veterans Affairs, Dept of (VA); HOUSE OF REPRESENTATIVES; Centers For Medicare and Medicaid Services (CMS); AMTRAK - Natl Railroad Passenger Corporation; Labor, Dept of (DOL); Executive Office of the President (EOP); Health & Human Services, Dept of (HHS); Social Security Administration (SSA); SENATE

Bills named: S. 728 (111th), H.R. 1293 (111th), H.R. 1211 (111th), H.R. 3155 (111th), H.R. 775 (111th), S. 535 (111th), H.R. 2770 (111th), S. 1963 (111th), H.R. 3813 (111th), H.R. 1169 (111th), H.R. 2243 (111th), H.R. 1037 (111th)

Housing HOU

Frank Melville Supportive Housing Investment Act of 2009, HR 1675, to make significant changes and improvements to the Section 811 Supportive Housing for Persons with Disabilities program and authorize a demonstration program that fulfills the promise of true community integration as envisioned by the Americans with Disabilities Act, to advance housing accessibility by filling in gaps of Fair Housing Act & Sec 504 of the Rehabilitation Act. Support HR 1408 Inclusive Home Design Act which requires all newly constructed, federally assisted, single-family houses and town houses to meet minimum standards of visitability for persons with disabilities

Contacted: Labor, Dept of (DOL); Social Security Administration (SSA); Health & Human Services, Dept of (HHS); Veterans Affairs, Dept of (VA); HOUSE OF REPRESENTATIVES; SENATE; Centers For Medicare and Medicaid Services (CMS); Executive Office of the President (EOP); AMTRAK - Natl Railroad Passenger Corporation

Bills named: H.R. 1408 (111th), H.R. 1675 (111th)

Budget/Appropriations BUD

Labor-HHS-Education and Related Agencies appropriations bill-- for additional administrative funding for the Social Security Admininstration in order to reduce the tragic backlogs in Social Security disability applications and for support of many social service programs in appropriations. (continued) As yet to be introduced legislation that may be in Budget/Appropriations or may be in another bill regarding possible terms of extending deadline for Amtrak obligation to make all stations accessible to people with disabilities past original deadline of July 26, 2010. Supported inclusion of $15 million in FY 2011 Defense Appropriations legislation in House and Senate for conducting multiple sclerosis research under the Congressionally Directed Medical Research Programs of the Department of Defense. Supported funding for new Vocational Rehabilitation and employment programs for people with disabilities including new competitive grant program to expand supported employment for youth with disabilities as they transition from school to the workforce, Projects with Industry, Supported Employment State Grant Program, Supported Employment Extended Services for Youth Grant Program, Workforce Innovation Fund, Model Transition Program for Students with Intellectual Disabilities into Higher Education, and Agribility. Supported inclusion of appropriate funding levels to support VA medical care and health research programs in FY 2011 Military Consruction-VA Appropriations (House and Senate). Opposed proposed cuts to Section 811 and Section 202 HUD housing programs in President's proposed budget for FY 2011 as these programs help provide affordable and accessible housing to people with disabilities.

Contacted: Centers For Medicare and Medicaid Services (CMS); SENATE; Labor, Dept of (DOL); AMTRAK - Natl Railroad Passenger Corporation; Social Security Administration (SSA); HOUSE OF REPRESENTATIVES; Executive Office of the President (EOP); Veterans Affairs, Dept of (VA); Health & Human Services, Dept of (HHS)

Education EDU

Support for the Elementary & Secondary Education Act (ESEA), also known as No Child Left Behind.Oppose a proposed policy in which a student's Individualized Education Program (IEP) would be used as the primary accountability tool under ESEA for students eligible for special educations supports and services.

Contacted: Social Security Administration (SSA); Veterans Affairs, Dept of (VA); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; Labor, Dept of (DOL); Executive Office of the President (EOP); Centers For Medicare and Medicaid Services (CMS); AMTRAK - Natl Railroad Passenger Corporation; SENATE

Labor Issues/Antitrust/Workplace LBR

Employment of people with disabilities issues including anticipated legislation on the Workforce Investment Act & the Rehabilitation Act of 1973 and encouraging federal government and federal contractors to live up to their obligation to be model employers of people with disabilities. Met with senior Dept of Labor officials in Office of Disability Employment Policy to discuss recommendations for employment of people with disabilities, and (cont) with senior official of Office of Federal Contract Compliance Programs (OFCCP) regarding federal hiring of people with disabilities, including the April 26 hiring event. See also recommendations regarding vocational rehabilitation in Budget/Appropriations.

Contacted: SENATE; Executive Office of the President (EOP); HOUSE OF REPRESENTATIVES; Veterans Affairs, Dept of (VA); Health & Human Services, Dept of (HHS); Labor, Dept of (DOL); Centers For Medicare and Medicaid Services (CMS); AMTRAK - Natl Railroad Passenger Corporation; Social Security Administration (SSA)