Reflections of a Disability Activist: A Conversation with Bob Kafka

Bob Kafka is a disability activist and organizer for ADAPT, an advocacy organization for and by people of all ages and disability types. Long a person with quadriplegia, he is also older than sixty-five. Generations Guest Editor Rosalie Kane recently spoke with Kafka about his work and ideas.

Image courtesy of flickr/spacey_stacey05


Tell us about ADAPT and its goals.

ADAPT is the largest all-volunteer, activist, national, grassroots, direct-action, disability rights organization in the country. We organize people with disabilities of all ages, their family members, attendants, and advocates to effect social change. Currently, our main issue is to reverse the institutional bias in the long-term-care (LTC) system. ADAPT believes that people with disabilities of all ages can live in the community with dignity when adequate services and supports are provided. The chant “Our Homes, Not Nursing Homes” encapsulates this vision.

Another tenet of ADAPT advocacy is to promote services and supports based on each person’s functional needs, not on a disability label or age. We recognize the different ways older Americans approach getting and using services, but believe the delivery of many services can be identical regardless of age or disability type. ADAPT believes a silo mentality has corrupted the delivery of services and has promoted an us-against-them mentality.

How well has ADAPT succeeded in reversing institutional bias?

ADAPT began its advocacy to reverse Medicaid institutional bias right after the Americans with Disabilities Act was passed in 1990. We never imagined that this would be such a long struggle. Though we have not attained the ultimate goal of people having an equal chance to choose HCBS, we’ve had significant wins. Most importantly, the debate is no longer [about] if there is an institutional bias, but how to reverse it—a major political shift.

Our first win was the funding of the Real Choice System Change (RCSC) Grants allowing states to apply for funding to reform their LTC systems. The idea for these grants came from a section in the Medicaid Community Attendant Services and Support Act, a bill originally drafted by ADAPT (now called the Community Choice Act). The initial funding began with a $75 million annual appropriation, but by 2012, RCSC had spent over $300 million for state systems reform. 

The next major victory was the inclusion of $1.75 billion dollars for the Money Follows the Person (MFP) Demonstration in the Bush budget. This money (delivered through an enhanced federal Medicaid match to states) has helped thousands of residents of nursing homes and other institutions move into community settings. The healthcare reform bill of 2010 added more than $2 billion to the MFP program, and included two other significant components: the Community First Choice Option, which allows people eligible for nursing home or other institutional services to choose HCBS, with states receiving 6 percent enhanced Medicaid match; and a Home- and Community-Based Services Incentive Option, which also offers an enhanced Medicaid match as a carrot for states to select it.

The forecast for Medicaid-funded services in 2012 is gloomy, but if we are strategic and work together as aging and disability advocates, we can make reforms in the Medicaid program to improve service delivery. One area for reform is the disparity in HCBS waiver use between the aging–physical disability community and the developmental disability community. Seventy-five percent of all waiver dollars are for people with developmental disabilities. Recent rule changes allowing states to develop waivers for all populations, regardless of label, may bring more equity and functionality to the long-term services and supports (LTSS) system.

Tell us about using an obscure part of the Nursing Home Minimum Data Set (MDS) to identify residents who want to leave nursing homes.

After the Supreme Court Olmstead case held that people with disabilities have a right to services in the “most integrated setting,” we looked for ways to implement the decision at the state level. Because Texas is fiscally conservative, we needed to fund community services for folks leaving nursing homes without being seen as budget-busters. A friendly legislator attached “Rider 37” (budget instructions) to the budget of the Department of Human Services that said the money appropriated for people in nursing facilities would follow them if they left the facility for the community (a precursor to the federal MFP program just mentioned). Given its budget-neutrality, Rider 37 sailed through the legislature.

Two practical questions followed: How to identify people who wanted to move to the community; and how to facilitate their transitions. I was amazed to learn that Item Q1a on the MDS quarterly assessment, which nursing homes are required to complete on all residents, asked if theresident wanted to move to the community, and previously unused results showed 20 percent of nursing home residents in every state wanted to leave. We realized we needed relocation specialists to work with identified individuals to build plans to leave nursing homes. Because of privacy concerns, we needed to get a Data Use Agreement from CMS before state agencies could reveal the names of residents wanting to leave.

What do you see as the main differences in the way HCBS services work for older people versus younger people?

The various identity silos we stick ourselves in (aged, physical disability, intellectual disability, developmental disability, brain injury) have caused major administrative and delivery problems and inequities in meeting the needs of the growing HCBS clientele. The country has more than 300 HCBS waivers; some states have ten-plus waivers. Each waiver has its own provider-base advocacy group that promotes its uniqueness and lobbying efforts at state legislatures.

Why are consumer-controlled services targeted for younger people, while the traditional agency model is okay for elders? Medicaid managed care is on the rise for elders and people with physical disabilities, but those with a label of “developmental disability” remain in a fee-for-service system. People with a cognitive disability acquired before age 22 can receive a considerably more enriched package of HCBS services than can a person with identical needs who acquired a brain injury, had a stroke, or was diagnosed with Alzheimer’s. Not only do services vary, but the agencies at the state level administering these services are also separate.

Though the philosophical basis for the Aging and Disability Resource Centers (ADRC) is to pull these disparate entities together, ADRCs are mostly driven by aging networks, with some support from the communities of people with physical disabilities. The communities of people with developmental disability and mental health disability largely do not participate.

What differences did you notice in professional approaches to healthcare and HCBS for your father in his old age, compared to approaches offered to younger persons with similar disabilities?

After a stroke, my dad moved from Fort Lauderdale, Florida, to Austin, Texas. At first he preferred not to live with my wife and me, so we found him a one-bedroom apartment in an assisted living facility. What struck me was the number of people inching along the halls using walkers with bright yellow balls on the back two legs to avoid sliding. Not a wheelchair in sight. I knew from personal experience as a “walking quadriplegic” that using a wheelchair for long distances and crutches for shorter jaunts made me much more mobile and independent, and conserved time and energy without reducing my overall functional capacity.

As my dad’s diabetes advanced, he entered the hospital to have his legs amputated. They wanted to put diapers on him to keep the bed dry. I suggested an alternate solution and a battle royal ensued. Only my continual ranting and raving—and finally a threat of legal action—made them capitulate. Upon discharge, my dad moved in with us and we arranged for him to get on the Texas HCBS Waiver program, which provided him with needed attendant services.

The next hurdle was to get him a motorized wheelchair. With no legs, and one arm affected by a stroke, he had to depend upon an attendant to push a manual wheelchair. You’d think he was a perfect candidate for a motorized wheelchair. You would think wrong! Another battle began between me and the durable medical supplier. I prevailed, but I wondered how many older people are unnecessarily made dependent by professionals. 

These personal experiences taught me that there needs to be ongoing education of medical and rehabilitation professionals and social workers on the commonalities of needs of older and younger people with disabilities.

What do you say to folks who say that 80-year-olds and 90-year-olds do not have the energy or stamina to manage attendant services? And what do you say to those who tell you that elders prefer nursing homes?

One word best describes what I want—and what I believe all adults, of any age, with or without a disability, want: control. This doesn’t mean we have to do everything for ourselves. We can use assistance with activities of daily living or cognitive issues, yet retain control over our environment and circumstances. Sometimes the independent living philosophy is erroneously interpreted to mean doing everything without help, and without care agencies. But having consumer-directed services doesn’t require that consumers become small employers. Consumer-directed means consumers select their personal care assistants, direct their activities while the assistants provide the services, and that they can dismiss assistants if their work is unsatisfactory, regardless of who the employer of record may be.

When I hear the argument that older people want to enter nursing homes, I ask what alternative options they were offered. The HCBS service system is so underfunded that to say older people had a real choice is questionable. When you look closely at people in nursing homes you find that their social support system has broken down. Physical, cognitive, and behavioral health needs are high, and services addressing those needs are minimal or non-existent in HCBS programs for older folks. If we reform the LTSS system to address a person’s needs rather than their age or particular disability, fewer will “choose” nursing homes.

At one time, you considered assisted living to be just another form of institution—more restrictive than you would wish for people with disabilities. Yet for many elders, assisted living is often seen as an escape from an institution. What are your thoughts about it?

My views on assisted living are evolving and, I must admit, inconsistent. My initial stereotypical view was that all assisted living facilities were wings of nursing homes with differences in name only.

My personal experience with my dad, however, changed my views. His assisted living setting hardly differed from the apartment where we grew up in the Bronx: he had a one-bedroom apartment with a small kitchen area and bathroom. He had a key to the apartment and could come and go as he pleased. There were no mandatory activities and the only institutional aspect to the place was being required to sit at the same table in the group dining room at meals. My dad needed some home health services while he was there, but he could choose any agency he wanted to provide him with services. It seemed that the vast majority of the people in my dad’s location (80 percent of whom were women) had chosen it for social reasons rather than to get help. The assisted living label covers a wide range of living arrangements, from apartment-like to more institution-like situations.

I now sound a new note of caution. Assisted living is popular in the older community, and as demand has risen, it has attracted more providers. Many of these providers are the same large corporations that own nursing homes. It seems that assisted living is morphing into an industry where providers appear to care more for the bottom line than about the clientele. Though assisted living advertises itself as a housing option, some in the industry lobby against policies like residents having keys to the front door and a lease. It is almost like they fear the application of the Fair Housing Act. Some assisted living providers promote themselves as housing, but fall back upon calling themselves “facilities” when it serves their purposes.

I’d say assisted living is neither the solution nor the problem. We need to pursue an aggressive policy for funding aging in place and give older people real alternatives to congregate living. This competition will assure that families and individuals get a real option to choose HCBS. Currently, assisted living provides competition to nursing homes. Our non-congregate community support system is not enriched enough at this point, so families and individuals don’t feel comfortable that HCBS will meet their needs; thus HCBS gives assisted living weak competition. It is meeting a growing need in lieu of nursing homes, but our focus should be on changing the situation where congregate solutions are still the default.

Now that you yourself are over sixty-five, do you have any worries about whether services could deteriorate for people who age with a disability? For those relying in part or totally on publicly funded services, are there any advantages, HCBSwise, when someone with a long-standing disability turns sixty-five?

Now that I have hit sixty-five and am getting over the traumas of being on Medicare and most of my friends becoming grandparents, I am left with the problem of what to call myself. Am I a person with a disability, a baby boomer, an aging hippie, a greedy geezer, a senior citizen, or just a closet policy wonk masking as a disability rights activist? Regardless of labels, we all face the possible erosion of publicly funded services and supports we fought so hard to establish over forty-five years. Entitlements like Social Security, Medicare, and Medicaid will fundamentally change in the next decade, and funding for discretionary programs (such as for those in the Older Americans Act) is threatened.

As an advocacy community, we must address these challenges: will we circle the wagons based on our individual identity-based programs and attempt to stave off changes? Or will we work together to promote reforms in critical programs that promote health, community integration, independence, and dignity? If ever the disability and elder communities needed to work together, that time is now. Regardless of the outcome of the 2012 elections, the economic realities will dictate political actions.

Our organizing priorities need to be at both national and state levels. Action on Medicare is federal, but for those concerned about HCBS, the way Medicaid is reformed is of paramount concern. Most Medicaid reform proposals give states even more flexibility to escape restrictive federal rules and regulations. The block granting of fixed sums to states is the most popular federal reform proposal from conservatives. We see similarly motivated efforts of state legislatures that submit 1115 waivers applications (i.e., Research and Demonstration Waivers) instead of the usual HCBS waiver applications to achieve the flexibility that they say will control their exploding Medicaid budgets. Also, under Medicaid, more states are going to managed care delivery systems for acute care and LTSS to get budget certainty in the Medicaid program.

State flexibility can be positive if its intent is to achieve more service coordination, more wellness and prevention, less institutionalization, and more HCBS. However, if the flexibility is sought just to save money by reducing critical services, cutting provider rates, and eliminating people from the programs, obviously we must fight this package of “reforms.”

In September 2011, ADAPT organized a My-Medicaid-Matters Rally, co-sponsored by ninetyfour other national disability, aging, children, religious, labor, and civil and human rights organizations to highlight the positive role Medicaid plays in American’s lives. We hope that the energy generated by the thousands of people in D.C. would convert to My-Medicaid-Matters campaigns at the state level. The “reform” train has left the station and we must be on it or get run over by it!

The differences between the aging and disability communities are breaking down, and logic, self-interest, and the power of working together are growing. We are more alike than different. This aging hippie is pleased to say, “I am old, have a disability, and am proud of it!”

Editor’s Note: This article is taken from the Spring 2012 issue of ASA’s quarterly journal, Generations, an issue devoted to the topic “30 Years of HCBS: Moving Care Closer to Home.” ASA members receive Generations as a membership benefit; non-members may purchase subscriptions or single copies of issues at our online storeFull digital access to current and back issues of Generations is also available to ASA members and Generations subscribers at Ingenta Connect. For details, click here.