Senate HELP Committee Released Report Showing ADA Compliance Still Lacking

September 2013

In July 2013, the Senate Health, Education, Labor, and Pensions (HELP) Committee released a report revealing that in many states, individuals with disabilities are still not fully integrated into their communities. The report declares that nearly 250,000 working-age individuals with disabilities remain institutionalized. This statistic demonstrates that states are failing to comply with a fundamental requirement of the Olmstead decision of 1999, in which the Supreme Court ruled that unnecessary segregation of individuals with disabilities violates the American with Disabilities Act (ADA). HELP Chairman, Senator Tom Harkin author the landmark ADA, has been an enthusiastic ally and advocate for the disability community. He continues to advocate for American's with disabilities and has strongly encouraged Congress and the Federal Government to continue to take steps towards de-institutionalization and community-based care. The HELP Committee report details several policy recommendations that aim to increase access to Medicaid funded community-based long-term care services across all 50 states.

For more information, visit the links below:
Full Report
Senate Press Release


New TAC study reveals that people with disabilities receiving Supplemental Security Income cannot afford housing anywhere in the U.S.

May 2013

The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force have released a study, Priced Out in 2012, which demonstrates that the national average rent for a modestly priced one-bedroom apartment is greater than the entire Supplemental Security Income (SSI) payment of a person with a disability. The study sheds light on the serious problems experienced by our nation's most vulnerable citizens - extremely low-income people with significant and long-term disabilities.

Priced Out in 2012
compares the monthly SSI payments received by more than 4.8 million non-elderly Americans with disabilities to the Fair Market Rents for modest efficiency and one-bedroom apartments in housing markets across the country. The Fair Market Rent for rental housing is determined by the U.S. Department of Housing and Urban Development (HUD).  According to HUD, rent is affordable when it is no more than 30 percent of income. SSI is the federal income maintenance program that assists people with significant and long term disabilities who have virtually no assets and - in most instances - no other source of income. Priced Out in 2012 reveals that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent.


New NCD Report Makes Recommendations To Implement Medicaid Managed Care Without Harming Americans with Disabilities

March 2013

WASHINGTON, DC – With no end to the budget conflict in sight, the National Council on Disability (NCD) – an independent federal agency that advises the President, Congress, and other federal agencies on disability policy – today released a report titled "Medicaid Managed Care for People with Disabilities: Policy and Implementation Considerations for State and Federal Policymakers" to assist with the implementation of managed care reforms without harming Americans with disabilities.

In the report, the agency outlines twenty-two principles to guide the design and implementation of managed care services for Americans with disabilities. NCD also recommends that the Centers for Medicare and Medicaid Services (CMS) create and circulate a comprehensive, easy-to-understand procedure spelling out the process for determining state demonstration waiver requests that seek to link Medicaid managed long-term services and supports.

Today, more than two-thirds of the 70 million Medicaid beneficiaries receive at least a portion of their services through a managed care plan. Until recently, the vast majority of these enrollees have been people without disabilities, however, now more than half the states are enrolling adults with disabilities as well as children with specialized medical needs. In addition, the number of States utilizing Medicaid managed care for long-term services and supports jumped from 8 in 2004 to 16 in 2012. This trend will undoubtedly increase as the Affordable Care Act expands Medicaid eligibility next year.

"A growing number of states are providing long-term services and supports through Managed Long Term Services and Supports," said Jeff Rosen, NCD Chairperson. "If implemented wisely, as intended, these changes can expand home and community services, increase inclusion, ensure quality and improve efficiency. If done poorly, decades of progress could be lost. NCD offers these guiding principles and recommendations to provide the kind of technical assistance on the design and implementation of support services that States, providers and consumers have been asking for."

Key Findings

-- At the time of publication, more than half of U.S. states are planning to increase the number of Medicaid beneficiaries enrolled in managed care plans;
-- In 2014, the Affordable Care Act will expand Medicaid to reach millions of low-income uninsured Americans, including many with disabilities, and states are widely expected to rely on managed care organizations to serve the newly eligible population; and
-- Transitioning Medicaid beneficiaries with disabilities into managed care involves a number of challenges. To be successful, services must be tailored to meet the personalized needs of people with disabilities.

Sample Recommendations

-- Design and implementation should be informed with the input of stakeholders, disability experts and providers.
-- Increased incentives for home-and-community based services should be provided and supported in the implementation of managed care plans.
-- An information system should be developed and maintained that enables real-time coordination and case management support.

The full report, including the guiding principles and specific recommendations developed by NCD, are available online at: http://www.ncd.gov/publications/2013/20130315/


Coalition to Protect the Rights of New York's Dually Eligible (CPRNYDE) releases "New York's 2012 Managed Long Term Care Report"

March 2013

       New York's Managed Long Term Care Report


Advocate on Duals!

April 2012

At least ten states—Ohio, North Carolina, Massachusetts, Vermont, Oregon, Oklahoma, Illinois, Washington, Wisconsin, New York, and Minnesota— have released plans in some form to set up programs for people with disabilities and seniors who are on both Medicaid and Medicare, the so-called duals. These initiatives are supported in health reform through the CMS office on Medicare and Medicaid Coordination.

Over nine million Americans are dually eligible—and the care they receive is some of the most costly in the country, with many dependent on long-term supports and services. Efforts to blend Medicare and Medicaid and integrate services can improve healthcare and enhance independence—or they can be a disaster, an imposition by states of managed care systems that supplant services for bottom lines. It is essential that advocates engage their state officials and CMS on duals initiatives that are being released!

The National Council on Independent Living, Disability Rights Education and Defense Fund, Boston Center for Independent Living, Community Catalyst, and Tri County Independent Living Center have developed the documents below – "Advocacy Principles for Dual Eligible Integration Policy Initiatives" and "Top Ten Priorities for Dual Plans" - to help guide advocacy on duals.

"Incentives for Community-Based Services and Supports in Medicaid Managed Long Term Care: Consumer Recommendations for New York State"

March 23, 2012

The following paper was developed by consumer advocates with recommendations to the State to incentivize community based care in Medicaid managed long term care. It was submitted to the NYS Department of Health and CMS to improve the pending waiver request to mandate managed long term care. NYAIL and several of our member centers have signed on in support of the recommendations, which include:

I. Modify capitation rate structure to incentivize community-based care for high-need individuals

II. Ensure Plans are at risk for nursing facility costs by requiring robust institutional provider networks

III. Contracts should include performance measures that incentivize community-based care and ensure timely provision of appropriate services

IV. Explore the State Balancing Incentive Payment Program (SBIPP) as a potential source of enhanced federal funding

"Connecting Consumers to Coverage: The Role of Navigators and Consumer Assistance Programs in Implementing Health Reform in New York"

September 2011

The Affordable Care Act (ACA) directs state health insurance exchanges to establish a Navigator program to coordinate with Consumer Assistance Programs, which together are charged with providing education and enrollment assistance, helping small businesses and individuals make good coverage choices, streamline enrollment, and troubleshoot if problems arise. However, the exact parameters and relationship between the two programs remain unsettled.

This new NYSHealth report, developed by Empire Justice Center and the Community Service Society, clarifies the ambiguities concerning the duties of the two programs, distills key points from discussions and research with nearly 250 stakeholders, and presents recommendations on how New York should design its Navigators and Consumer Assistance Programs to avoid duplication of efforts and best meet the needs of New Yorkers.

Through subcontract with Empire Justice Center, NYAIL worked with Medicaid Matters New York to solicit stakeholder feedback at regional meetings in Troy, Rochester and Watertown regarding the potential role of Navigators and Consumer Assistance Programs in helping New Yorkers enroll in and use coverage as health reform is implemented in our state. The final report highlights the needs of people with disabilities and the role of ILCs in providing enrollment assistance.

"Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers"

September 2011

AARP, the Commonwealth Fund, and the Scan foundation developed the "State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers," comparing state data on the availability and quality of long term care services. An executive summary of the scorecard report and its accompanying press release are included below. The scorecard comparison tool and a full report on its findings are available at this link: http://www.longtermscorecard.org/.