AARP says disabled Americans want greater consumer choice
By Kathie Obradovich, Journal Des Moines Bureau | Posted: Thursday, May 22, 2003
DES MOINES -- A first-ever nationwide survey of disabled Americans age 50 and older points to an "almost universal" desire for greater consumer choice over services aimed at preserving independent living, advocates said Wednesday.
As many as 3 million people age 50-plus with disabilities need more help than they receive now with daily activities, according to the survey conducted for AARP, the nation's largest advocacy group for people over 50.
The survey of just over 1,100 older adults also reports that the greatest fears reported by people with disabilities is a loss of independence and mobility. "We expected younger disabled people to say they wanted more control, but there was almost no difference by age," John Rother, national director of policy and strategy for AARP, said. "This is a universal human desire for more control."
He said the survey also signifies a "striking rejection" of agency-based care, which has been the model across the country. Instead, he said, people want to decide for themselves which services they receive and who comes into their homes to help them.
For example, an elderly person who receives in-home meal assistance today generally must eat on the agency's schedule, rather than when they want, Rother said.
A national pilot project aimed at increasing consumer choice over services for the disabled could include Iowa, added Jack Hillyard, director of the Employment Policy Group at the University of Iowa's Center for Disabilities and Development.
Hillyard is working on an effort to include Iowa in a pilot project to give consumers a cash allowance under Medicaid to purchase their own home or community-based services. Three states, Arkansas, Florida and New Jersey, already are participating in the Cash & Counseling Demonstration and Evaluation program.
The program would allow residents to hire family members or friends as their workers or use their funds to modify their homes -- something they can't do under existing Medicaid services, Hillyard said. It would not be a "voucher" program, however, which has been criticized for capping payments to individuals.
Hillyard said he is encouraged by Iowa's chances to be included in the pilot program, which likely first would target disabled youth before expanding to the elderly population.
Iowa is currently 37th in the country in the share of Medicaid long-term care spending devoted to home and community-based care, Bruce Koeppl, state director for AARP, said. That's something the state needs to work on, he said, especially considering that the state's Senior Living Trust Fund is now expected to run out 10 years earlier than originally planned.
Rother said AARP's recommendations include promoting programs such as Cash & Counseling. The group also is seeking better insurance and public funding for long-term supportive services.
He said the study marks the first time there has been a national survey of disabled people over age 50. The report indicates that most people in this category are doing pretty well.
More than half of people with disabilities manage independently, while 49 percent receive some help with daily activities such as cooking, bathing and shopping. Two-thirds of the people surveyed were generally satisfied with their quality of life.
However, more than half of those with disabilities, 53 percent, reported they were unable to do something in the past month that they wanted to do, such as household chores or exercise. And one out of four seniors who receive some form of assistance said they need more help.
As many as 3 million people age 50-plus with disabilities need more help than they receive now with daily activities, according to the survey conducted for AARP, the nation's largest advocacy group for people over 50.
The survey of just over 1,100 older adults also reports that the greatest fears reported by people with disabilities is a loss of independence and mobility. "We expected younger disabled people to say they wanted more control, but there was almost no difference by age," John Rother, national director of policy and strategy for AARP, said. "This is a universal human desire for more control."
He said the survey also signifies a "striking rejection" of agency-based care, which has been the model across the country. Instead, he said, people want to decide for themselves which services they receive and who comes into their homes to help them.
For example, an elderly person who receives in-home meal assistance today generally must eat on the agency's schedule, rather than when they want, Rother said.
A national pilot project aimed at increasing consumer choice over services for the disabled could include Iowa, added Jack Hillyard, director of the Employment Policy Group at the University of Iowa's Center for Disabilities and Development.
Hillyard is working on an effort to include Iowa in a pilot project to give consumers a cash allowance under Medicaid to purchase their own home or community-based services. Three states, Arkansas, Florida and New Jersey, already are participating in the Cash & Counseling Demonstration and Evaluation program.
The program would allow residents to hire family members or friends as their workers or use their funds to modify their homes -- something they can't do under existing Medicaid services, Hillyard said. It would not be a "voucher" program, however, which has been criticized for capping payments to individuals.
Hillyard said he is encouraged by Iowa's chances to be included in the pilot program, which likely first would target disabled youth before expanding to the elderly population.
Iowa is currently 37th in the country in the share of Medicaid long-term care spending devoted to home and community-based care, Bruce Koeppl, state director for AARP, said. That's something the state needs to work on, he said, especially considering that the state's Senior Living Trust Fund is now expected to run out 10 years earlier than originally planned.
Rother said AARP's recommendations include promoting programs such as Cash & Counseling. The group also is seeking better insurance and public funding for long-term supportive services.
He said the study marks the first time there has been a national survey of disabled people over age 50. The report indicates that most people in this category are doing pretty well.
More than half of people with disabilities manage independently, while 49 percent receive some help with daily activities such as cooking, bathing and shopping. Two-thirds of the people surveyed were generally satisfied with their quality of life.
However, more than half of those with disabilities, 53 percent, reported they were unable to do something in the past month that they wanted to do, such as household chores or exercise. And one out of four seniors who receive some form of assistance said they need more help.
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