Published May 26, 2012, Pawtucket Times   

           AARP, a Washington, DC-based aging advocacy group, generates a new report to provide direction to the nation’s policy makers as to how to keep America’s age 50 and over disabled population independent and in  control of their daily lives. 

           According to the latest AARP study, lack of affordable services, a fragmented delivery system and the caregiver’s limited knowledge of the delivery system, are barriers that keep age 50 and over Americans with disabilities from living active and independent lives. 

           The AARP report, “Beyond 50 2003: A Report to the Nation on Independent Living and Disability,” incorporates data obtained from the first ever national survey of Americans age 50+ with disabilities, documenting the gap between what they say, need, and what is available to them. 

           “Long-term independence for persons with disabilities is an increasingly achievable social goal, AARP Policy and Strategy Director John Rother says in a written statement released with this report.  “But it will require time and the collective creativity of the public and private sectors,” he added. 

           “Meanwhile, even minor changes can lead – at least in the short-term – to important life-style improvements for those with disabilities today,“ Rother said.  On the other hand, long-term improvements will require fundamental policy changes.

           “As the influx of Boomers enters their 50’s and 60’s, they will bring their attitudes of competitive consumerism to health care delivery, and will demand greater choice and control of available services,” explained Rother.   “The good news is that there is time to prepare for those demands, he said.  “Along with improvements in medicine and health, we are seeing some declines in disability.  New technologies are also extending Americans’ years of independence.”

           According to the AARP report, 46 percent of the over 50 respondents with disabilities (including nearly 60 percent of those between the ages of 50 and 64) believe that having more control over decisions about services and the help they need would bring a major improvement in the quality of their lives.   However, they report that their greatest fear is loss of independence and mobility.

           The AARP report, the third in a series of comprehensive studies on the status of Americans over age 50, found that 51percent of older persons with disabilities are managing independently; 49 percent are not receiving any regular help with daily activities, such as cooking, bathing and shopping.  More than half of those with disabilities (53 percent) tell researchers that they were unable to do something they needed or wanted to do in the past month – quite often basic tasks such as household chores or exercise.

           Most (88 percent) of the assistance the older disabled persons reported receiving is volunteer assistance from family or other informal caregivers.  Sixty one percent strongly prefer this type of assistance with everyday tasks, while only one out of three uses any community-based service. 

            The AARP report found that independence, for older disabled persons, can be easily enhanced by using assistive equipment (such as walkers and wheelchairs) and new technologies that are now more widely available.  However, caregiver assistance with daily activities will take more time and resources.   The researchers estimate that as many as three million persons over age 50 with disabilities (almost 25 percent) need more assistance than they receive now with daily activities. 

           Furthermore, the report said that persons 50 and older with disabilities place inadequate health insurance on the top of their list of issues that are not being adequately addressed. Specifically, Medicare coverage still does not pay for prescription drugs and assistive equipment is not covered by some health insurance.

           Adds Rhode Island AARP Director Kathleen Connell, many of the issues addressed in the newly released AARP report are not just about today’s persons with disabilities, but about all of us, who if we live long lives (and longevity is increasing) are likely to face disability.

           “This is about long-term independence and not long term care, which refers not just to what we need during the most vulnerable and frailest stages of our disability, as ‘long term care’ suggests, but to what we want during what, in most cases, is a longer, more functional stage of disability,” Connell tells All About Seniors.

           While minor fixes would make a difference, other improvements will require longer-term fundamental changes and more public dollars.  Based on the “Beyond 50” findings, AARP has outlined a number of policy changes for making critical long-term improvements:

• Older persons with disabilities must be insured against the high costs of accessing long-term supportive services.  Ways must be found to share the risk of these unpredictable costs more widely among public and private sources. 
• Public funding for long-term supportive services needs to be reoriented toward more options for home and community-based care. The nation also must provide more options for “consumer-direction” in publicly funded programs.
•  Communities need to be made more physically accessible for more people with disabilities.
•  Information and services need to be more navigable for those who are trying to learn more about available long-term services and whether or not they are eligible.
•  America’s health care system must adjust its focus to enhance functioning and health-related quality of life, not just provide acute and curative care.

             The “Beyond 50” report found that people with disabilities 50 and older give their community poor grades (between C+ and B- in their efforts of making it possible for them to live independently. In many communities, the researchers say, that public transportation is oftentimes rated poorly.

          The researchers say that the troubling findings reveal that the nation is ill-prepared to meet the calls of age 50 and over persons with disabilities for more control and independence in the lives.    

           AARP’s report is a wake up call for state and national policy makers who will be charged with making sound policy decisions for a grayingAmericawith disabilities.  If policy makers heed the recommendations of AARP’s report, systemic changes may well give dignity to millions of older persons with disabilities who only want to remain independent and control of their daily lives.  Just like the rest of us.

           Herb Weiss is a Pawtucket-based writer covering aging, health care and medical issues.  The article was published in May 2003 in the Pawtucket Times.  His articles also appear in state and national publications. He can be reached at hweissri@aol.com.