Want to help the aging network support community-dwelling older adults facing health declines and disability? Take health care out of the driver’s seat.
Arthur Fleming would not have been happy to hear the story of Mary Ann and Frank Spitale.
Fleming, who died in 1996, served as secretary of Health, Education, and Welfare and headed the U.S. Commission on Aging during his distinguished government career. His name has become synonymous with the “aging network,” that system of federal, state, and local agencies that Fleming envisioned as an integrated planner and provider of services to older Americans living in communities around the nation.
Mary Ann and Frank Spitale, on the other hand, are an older couple who have been let down by our lack of investment in Fleming’s vision.
During a recent workshop at the National Academies of Sciences, Engineering, and Medicine, the Spitales described the hardships they’ve endured since Frank, a retired pharmacist, began experiencing a dramatic decline in his health. That decline precipitated numerous hospitalizations and left Mary Ann to provide most of the care required by their 35-year-old daughter, Andi, who has lived with Smith-Lemli-Optiz syndrome since birth.
But here’s the thing. The Spitales didn’t complain about Frank’s medical care, or even about the strain associated with providing round-the-clock care to a daughter living with a disability.
Their main source of stress, it turns out, was their interaction with a bureaucratic maze of government agencies that were created to help people just like them.
WHEN THE SYSTEM ISN’T HELPING
The challenges encountered by the Spitales are too numerous to catalogue here. Suffice to say that the family endured 21 months of unrelenting frustration after moving to a new state so they could be near family members who are helping Mary Ann care for Frank and Andi.
In their effort to recreate the support system they had in their home state, Mary Ann and Frank:
- Filled out more applications for assistance than they can count,
- Received inaccurate or misleading information from the staff of government agencies,
- Endured a string of unanswered phone calls and emails in response to their pleas for help,
- Struggled to make sense of confusing and conflicting rules that some agency staff didn’t even understand, and
- Submitted to countless assessments from numerous case managers.
In the end, the Spitales needed a professional advocate to secure the help they needed, including access to a day program for Andi and post-hospitalization care for Frank.
Mary Ann is still waiting to hear if she’ll be granted access to respite programs so she can take care of herself.
The Spitale’s story isn’t unique, unfortunately. But it provides painful evidence that we’re still a long way from offering our older citizens the kind of nationwide, integrated, social services network that Arthur Fleming envisioned.
INTEGRATION ISN’T ENOUGH
The National Academies hosted its workshop to explore how we might better integrate health care and social services to address the issues that families like the Spitales face every day. But, as I told the group during my presentation, striving for integration simply isn’t good enough.
We can’t tweak our fractured system to make it work better. Instead, we have to turn that system on its head by taking health care out of the driver’s seat. As long as the medical system drives our interactions with people like the Spitales, we’re not going to get anywhere.
Why? Because people like the Spitales do not live in the medical care system. They live in the world. For 365 days of the year, they work hard to live successfully in that world, even in the face of health declines and disability. They need a strong social service delivery infrastructure that understands that struggle and responds to it.
That service infrastructure must have:
Fewer layers: The complexity that the Spitales encountered when asking for help takes my breath away. It doesn’t take a genius to understand that a system designed to serve people who are vulnerable should be the hallmark of simplicity. So, let’s remove all those bureaucratic layers and rely instead on a single point of entry that starts in the social service system and guides people to medical services as needed.
More services: Over the past few years, we’ve witnessed a decimation of the Section 202 Supportive Housing for the Elderly Program, which was our nation’s only program supporting elders who are frail and have disabilities. Now, we’re seeing the same abandonment of nutrition and transportation programs that have been a lifeline for so many community-dwelling older adults. We can’t build an effective social service infrastructure without an investment in these and other vital services.
Better teamwork: We’ve made progress using interdisciplinary teams to provide coordinated care to older people and people with disabilities. But we’ve missed the boat by limiting those teams to health care professionals. We need social service providers, frontline workers, and family members on these care teams. They know the care recipient better than anyone. It makes no sense to exclude them.
A strong workforce: We haven’t invested enough in the workforce we need to create a person-centered social service infrastructure. We need to recruit and train more workers who can work in the community to address the unique needs of older people and people with disabilities, be effective members of interdisciplinary care teams, and help people in need access appropriate services and supports.
WHAT OLDER PEOPLE WANT
Ask older people what they need to remain healthy and independent, and I doubt they will tell you they need a better primary care physician.
Instead, they will ask for affordable housing and reliable transportation. Ask them a second time and they will request access to congregate meals, help to manage chronic conditions, and more opportunities for social interaction.
I’ve had these conversations with older adults, and they’ve convinced me that our nation is investing too many dollars in a medical care system where older people spend only a fraction of their time.
Instead, we need to take our lead from Arthur Fleming and invest in a social support infrastructure that helps older adults and people with disabilities live their lives, day in and day out.
Robyn I. Stone, DrPH, is senior vice president of research at LeadingAge, and co-director of the LeadingAge LTSS Center @UMass Boston. Her widely published work addresses long-term care policy and quality, chronic care for people with disabilities, the aging services workforce, affordable senior housing, and family caregiving.