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Policy Issues

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Addressing Policymakers’ Concerns About Hiring Family Caregivers

During the planning phase of developing the CCDE, policymakers and program administrators often voiced concerns about hiring family members as paid caregivers. They worried about issues such as inappropriate use of the cash benefit and neglect of consumers. These issues were also addressed in policy expert interviews conducted as background research for CCDE. The case studies can help address these concerns as they provide rich examples of devoted families going to heroic extremes to care for their relatives with disabilities. They illustrate large, close families pitching in to cover extensive caregiving needs of relatives with severe disabilities. They were able to provide care during early morning, evening and weekend hours—times not traditionally offered by agency services. Rather than demonstrating policymakers’ feared abuse of the cash benefit, case studies showed paid relatives using their wages to contribute to the family income and buying needed items for the consumer.

Case study findings are consistent with early evaluation results and Arkansas’ experience. Over three-quarters of Arkansas consumers hired a family member (n=200). Consumers reported high satisfaction level with times of day they could get help (95%), the care arrangements they make, and their relationship with their hired worker (100%). Since program implementation in December of 1998, Arkansas has experienced almost no incidences of fraud and consumer neglect. For the very few problems that have occurred, IndependentChoices has been able to offer remedial assistance. The chances of misusing the cash benefit are greatly limited as almost all Arkansas consumers use the bookkeeping services that are offered.

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Importance of Even Small Cash Benefit Amounts and Creative Uses of the Cash Benefit

The average Arkansas cash benefit is about $350 per month, which is small compared to other states. Yet, the case studies show how this small amount has meant a great deal to IndependentChoices consumers. Early Arkansas evaluation results indicate more than eight out of ten consumers said that the monthly allowance had improved their lives. The case studies showed that 16 of the 25 consumers used some of their cash benefit for purposes other than personal care services. Some creative uses of the cash benefit include:

  • Purchases for prescription and over the counter medicines, personal care items, and groceries, which included items such as: an electric razor, Ensure, nitroglycerin patches, and lotions for dry skin.
  • Purchases for home improvements included items such as wheelchair ramps, bathroom and kitchen repairs (i.e. repair of a kitchen sink, toilet, stove, and home heater), a Hoyer lift, and a septic system.
  • Expenditures to improve quality of life included gas for transportation, a mattress and box spring, and repairs to essential assistive devices (e.g. electric scooter).

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Cash and Counseling Banner of Participants' Smiling Faces