As of 2004 about 13 percent, or 550,000, of California’s Medicare beneficiaries were on Medicare with a disability. This number is increasing and has increased 18 percent between 1999 and 2004 (see California HealthCare Foundation publication, Medicare Facts and Figures: a California Perspective). Because different rules and programs often apply to beneficiaries living with disabilities, navigating the health care system and the programs/services they are entitled to can be an overwhelming challenge. Advocates and others working closely with Medicare beneficiaries must be aware of the diverse needs of younger beneficiaries, know about the services available to them, and know where to refer them for help in accessing these services. Outlined below are some ways advocates can be sensitive to these needs, followed by a list of resources and organizations working in the area of disability rights and services, many of whom advocates can refer their clients to for in depth assistance.
Ways to be aware of younger beneficiaries’ needs:
1. Be familiar with the different health, financial, and employment situations of those younger than 65:
- Understand that different Medicare coordination of benefits rules apply to younger Medicare beneficiaries. (see our Medicare and Disabilities section )
- Know about the different health insurance coverage options available to younger Medicare beneficiaries. The options vary depending on whether people have health coverage through an employer or if they bought their own individual health insurance policy that they pay for themselves. Also, younger beneficiaries just becoming eligible for Medicare have an open enrollment period to buy certain Medigap policies without a health screening. Because a number of considerations may come into play with each individual person’s situation, it may be best to seek counseling from a counselor with the Health Insurance Counseling & Advocacy Program (HICAP). To schedule an appointment, contact your local HICAP office or call 1-800-434-0222.
- Become familiar with the AIDS Drug Assistance Program, Medi-Cal (also see our Medi-Cal section), Veterans Affairs benefit, and pharmaceutical assistance programs (PAP) rules. (For information on PAPs, see last edition’s article, Is Public Outcry Pushing PAPs Back into the Picture?)
2. As some persons with disabilities are able to return to work, advocates need to be familiar with rules on how work and/or earnings affect various benefits. These include:
- Coordination of Medicare with group health plans through work;
- Coordination of Medicare with spouse/partner group coverage and association plans;
- Understanding the affect of returning to work on benefits like Social Security disability and existing health coverage (for example, if someone has a Medigap policy, she can suspend the policy during a trial work period and keep Medicare Part A premium free); and
- Understanding how earned income and the impairment related work expense disregards affect eligibility for Medicare Part D low-income subsidy.
Understanding these rules for the various health coverage, benefit and employment programs operated by state, federal government and private organization programs and how they apply to changing conditions/situations is crucial for ensuring people maintain a continuity of benefits. Yet, because they are quite complex, it may be most helpful for service providers to know of several disability rights advocates and organizations to refer to for this specialized knowledge. HICAP is available for health insurance information and counseling as it relates to people with disabilities who will become eligible for or are already on Medicare.
The World Institute on Disability’s website Disability Benefits 101 (DB101) offers another resource that helps people with disabilities and service providers understand the connections between work and various disability benefits. Created from a customer-centered viewpoint, DB101 provides several client stories to illustrate situations and has easy-to-read language for program descriptions, and sections on frequently asked questions, common pitfalls, and lists of resources. The site is also available in Spanish and includes a benefits calculator to help calculate how benefits may change upon returning to work. While this site and others (such as many disease-specific organizations like the National Multiple Sclerosis Society website and others listed below) are excellent tools for people to educate themselves and begin planning, they are not a replacement for a trained benefits planner. See this list of benefits planners in various California counties.
3. Agencies can help each other by:
- Having a referral list of disease-specific community-based organizations and a sense of what services they provide. These organizations will understand the health care and prescription needs of the populations with whom they work. (See the Medicare Rx Connect website for information on Medicare Part D as it relates to people with specific diseases, health conditions, and/or disabilities. Several of the websites listed below also have links to disease specific resources and organizations.)
- Networking with and being available to the disease-specific organizations and their clients through: having consumer hotlines, offering individual counseling for clients, and providing trainings, updates, and educational materials.
4. Help advocate and provide for the needs of beneficiaries with disabilities by:
- Collecting clients’ stories of problems for legislative/policy/media advocacy;
- Making legal referrals when appropriate, such as for help setting up a pooled income trust to help people meet cancer treatment copayments;
- Providing publications in simple language; and
- Providing Braille, audio, and/or large print versions of publications. (For ordering accessible versions of Medicare publications, see the Center for Medicare and Medicaid Services’ (CMS) Medicare Publications Catalog.)
Resources and Disability Rights and Services Organizations
Listed below are a number of disability rights and services organizations, each which provide a wealth of information and resources for both advocates and those living with disabilities. This is only a partial list as several of the websites below have links to extensive resource directories.
- American Association of People with Disabilities
A national nonprofit cross-disability member organization that works to ensure economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. AAPD works in coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973.
- Department of Rehabilitation (DOR)
DOR assists Californians with disabilities obtain and retain employment and maximize their ability to live independently in their communities. They work with individuals of every type and category of disability and provide vocational rehabilitation services to eligible Californians. DOR also provides ADA technical assistance and training and funds 29 Independent Living Centers, which offer information and referral services to assist individuals with disabilities in living active, independent lives. Some other specific services include: Blind Services, the Business Enterprises Program (BEP), Deaf and Hard of Hearing Services, Assistive Technology, Transportation, and Independent Living services.
- Disability Resources on the Internet
A nonprofit organization dedicated to locating disability information from a variety of resources and providing links to it in an organized, easy-to-understand format. Their website has a Regional Resource Directory that lists thousands of local agencies and organizations, arranged by state and subdivided by topic. The link for California is: http://www.disabilityresources.org/CALIFORNIA.html
- Disability Rights Advocates (DRA)
A non-profit law firm that protects and advances the civil rights of people with disabilities. DRA advocates for disability rights through high-impact litigation, as well as research and education. They do not charge clients for services.
- Disability Rights Education and Defense Fund (DREDF)
A national law and policy center that protects and advances the civil rights of people with disabilities through legislation, litigation, advocacy, technical assistance, and education and training of attorneys, advocates, persons with disabilities, and parents of children with disabilities.
- Family Center on Technology and Disability (FCTD) resource page
Resource page has links to disability organization sites organized by specific diseases and conditions.
- National Council on Disability
NCD is an independent federal agency that makes recommendations to the President and Congress and promotes policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities. NCD is currently working on a series of reports known as Investing in Independence, which interrelate with centerpiece initiatives presented in President Bush’s New Freedom Initiative. These reports focus on transitioning people from Social Security income to work, long term supports and services, the impact of the Americans with Disabilities Act, and financial incentives related to employment and living independently.
- National Council on Independent Living (NCIL)
As a membership organization, NCIL advances the independent living philosophy and the rights of people living with disabilities through consumer-driven advocacy.
- National Organization on Disability
N.O.D. works to expand the participation of people with disabilities in all aspects of American life. They raise disability awareness through a variety of programs and information.
- Protection and Advocacy, Inc. (PAI)
A non-profit disability advocacy organization that works to bring fairness and justice to people with disabilities through: filing lawsuits on behalf of individuals or groups; investigating charges of abuse and neglect; building peer/self advocacy groups; creating community partnerships; advocating for change in laws, regulations and public policy; and providing information to those who may not know about their rights.
- World Institute on Disability (WID)
A non-profit research, public policy and advocacy center that promotes the civil rights and full societal inclusion of people with disabilities. Their work focuses on four areas: employment and economic development; accessible health care and Personal Assistance Services; inclusive technology design; and international disability and development. WID offers excellent manuals, videos, and comprehensive single and multiple-day trainings to organizations and agencies on a variety of disability issues, including:
- Access to Medical Care: Adults with Physical Disabilities
- Making Diversity Work for You: Hiring and Retaining People with Disabilities
- The Technology Policy Division – Consulting and Training
- How to Create Disability Access to Technology: Best Practices in Electronic and Information Technology Companies
- Working Without Losing Healthcare or Other Needed Benefits
- Making Individual Development Account (IDA) Programs Accessible
WID also created the Disability Benefits 101 (DB101) website (mentioned above).
People who know of other disability rights resources/organizations that other advocates would benefit from knowing about, please email Karen Fletcher at
. Also, as this is a topic that California Health Advocates would like to continue covering in more depth, people who have particular cases, issues, and/or questions involving younger Medicare beneficiaries can email Karen. These issues can be discussed and explored in upcoming newsletters.