Older Adults and People With Disabilities Want Choice and Control

We all like to have choices. Being able to decide where we live and work, what we eat and how we spend our leisure time all enhance life satisfaction.

Having a disability doesn’t diminish the desire for choice. But unfortunately, people with disabilities often lose control over how services are provided when they depend on Medicaid for home- and community-based services (HCBS), such as meal preparation or help with bathing and dressing.

It doesn’t have to be this way.

Participant-directed services give consumers greater control

A Medicaid demonstration project known as Cash and Counseling showed that programs can deliver services in a way that enhances individual choice and control. This approach had positive outcomes and led to broader adoption of participant-directed programs.

In these programs, consumers can hire and fire their own workers, schedule their hours and, in some cases, determine their rate of pay. Some programs allow consumers to manage their budgets (as determined by the program’s needs assessment). This budget authority gives much greater flexibility to program participants. For example, using funds to purchase a washer and dryer might allow someone with limited mobility to do their own laundry, if they can’t get to a laundromat.

Because consumer choice is so important, a major report issued this year by AARP, with support from The SCAN Foundation and The Commonwealth Fund (the LTSS Scorecard), includes access to participant-directed services as a measure for ranking state long-term services and supports systems. But how many people have these options, and how much choice do they have?

New data show few people with disabilities are able to direct their own services

NRCPDS graph
Source: National Resource Center for Participant-Directed Services. 2013 National Inventory Survey on Participant Direction. September 2014. https://nrcpds.bc.edu/details.php?entryid=445


A new report by the National Resource Center for Participant-Directed Services (NRCPDS) documents the current state of participant-directed programs. The report identifies 277 publicly administered programs in all 50 states and the District of Columbia. It shows modest growth in these programs, which serve over 838,000 individuals. But only a tiny percentage of low-income people with disabilities who receive public benefits have access to participant direction. The NRCPDS calculated that the national average is 6 percent; only six states serve greater than 10 percent of the target population in participant-directed programs.

Most programs responding to the survey allow consumers to hire relatives or neighbors to provide services, although nearly all prohibit the hiring of a spouse or parent. While most programs allow consumers to manage their budgets, nearly all place restrictions on what items can be purchased.

The report notes that participant-directed programs are popular: Two-thirds of those that responded to the NRCPDS survey have waiting lists. Public programs that deliver HCBS should work to expand participant-directed options so that all consumers who prefer this approach have access to it.

HCBS programs should measure quality and consumer satisfaction

Few programs in the NRCPDS survey reported measuring outcomes, such as health status or quality of life. All HCBS programs should do a better job of measuring and reporting on quality and consumer satisfaction. The bottom line: HCBS programs should enhance life satisfaction, provide high-quality services, and ensure that consumers have meaningful choices.

Enid Kassner
About the author:   Enid Kassner directs the livable communities/long-term services and supports team at the AARP Public Policy Institute. She oversees research and policy development that focus on expanding consumer access and choice to an array of affordable long-term services and supports  options, with an emphasis on improving home- and community-based services, supporting family caregivers and making communities more livable.


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