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August 01, 2017

Overcoming Challenges to Accessing Public Benefits for Persons with Dementia

by Kate Lang & John Whitelaw

(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 38, Issue 6.)

People with cognitive impairments can experience signif­icant barriers in accessing essential safety net programs such as Social Security, Supplemental Security Income (SSI), and Medicaid. Knowing the ins and outs of these programs can help overcome these barriers. We will explore how to navigate public benefits programs and advocate on behalf of people with dementia to improve their economic security and access to health care.

    Those living with Alzheimer’s disease and other cogni­tive impairments will need to rely on others to manage their finances. Individuals with dementia may require a represen­tative payee to access and manage their Social Security or SSI benefits. Understanding the rep­resentative payee program is essential to helping older adults with cognitive impairments achieve economic security.

    A representative payee is an individual or organization appointed by the Social Security Administration (SSA) to receive Social Security or SSI benefits for someone who cannot manage or instruct someone else to manage his or her in­come. In administering the representative payee program, SSA follows certain procedures and regulations in order to: 1) determine whether it is in the beneficiary’s best interest to have a payee; 2) select the proper payee; 3) have adequate oversight over the payee’s activities; and 4) pro­vide redress for any misuse of funds.

    People with dementia frequently require Medicaid-funded long-term services and sup­ports, such as nursing home care or home and community-based services. However, applying for these services, navigating the eligibility process, ensuring that sufficient services are received, and that the service is in the setting of the individual’s choice, are all challenges that may require help from an advocate. For example, state assessment processes may not fully take cognitive impair­ments into account, resulting in too few hours of care being authorized for people with dementia.

    Dementia also has arisen as an important consideration in the new federal regulations that govern the settings in which home and community-based services (HCBS) are provided. The regulations work to promote a non-institu­tional environment in residential and non-residential set­tings such as, respectively, assisted living facilities and day centers. One important factor in a non-institutional envi­ronment is the ability of the Medicaid beneficiary to move both outside and within the setting. CMS guidance focuses on appropriate dementia care, and cautions against policies that too easily restrict a person’s freedom of movement.

    Similar issues arise in nursing facilities. Facility resi­dents have the right to access the greater community, and CMS again cautions against blanket policies relating to residents with dementia. In the person-centered care that is identified as the gold standard, a resident should be able to make decisions around issues both big and small, as modi­fied by thoughtful consideration of his or her capacities. It is improper to follow broad generalizations around residents with dementia: each resident will exhibit differ­ences both in preferences and in capacities.

    This session will incorporate case studies, to help audi­ence members identify challenges related to public benefits for older adults and develop advocacy strategies to address them. Coverage of the issue will be primarily from a practi­cal point of view. This session will be held on October 26 from 2:15 to 3:30 p.m. in Inspiration A.

Kate Lang joined Justice in Aging (formerly the National Senior Citizens Law Center) in December 2012 in the Washington, DC office as a member of the Economic Secu­rity team.

John Whitelaw is a supervising attorney in the Aging and Disabilities Unit at Community Legal Services’ North Central office, Philadelphia, PA.

by Kate Lang & John Whitelaw