Long-time activist Bob Kafka calls for "the next evolution of the independent living movement"

Empowering Service Delivery

by Bob Kafka

Bob Kafka is an organizer with ADAPT.

Since the start of the independent living movement 20 years ago, we've been debating the role independent living centers should take in delivering services. What is the role of a "true advocate?" we've asked. "Should we become part of the system, or should we stay outside?" These debates have occupied many hours of conference time over the years.

We must get beyond this debate!

Purists have argued that "pure" advocacy would be co-opted by the economic pressures of a service delivery role. Instead of being a strong voice for the interests of a disabled person, they've said, a Center that delivered services (and saw itself as part of the service delivery system) would become more interested in the bottom line, or in keeping a contract with a state agency. These purists have insisted that only by being outside the system can one truly advocate for the things necessary to change the system.

This argument, though, is becoming more and more difficult to sustain. While Nero fiddles, Rome is burning. People with disabilities are demanding more than rights: they are demanding services. Almost two million people with disabilities, young and old, are locked away in nursing homes and other institutions, unable to use the rights promised them by passage of the Americans with Disabilities Act. While the disability community has this intellectual argument, services vs. advocacy, our brothers and sisters lie in bed waiting for real alternatives to institutionalization.

The healthcare system in this country is drastically changing the way acute medical services and long-term support and services are delivered. This change is occurring at a rapid pace. The disability community must be at the forefront of these changes or be relegated to a minor role. People with disabilities, including those of us with long-term care needs, have been fighting to be excluded from the managed care juggernaut based on the belief that the cost of our services, rather than our service needs, will be the incentive that motivates the managed care organization.

But while we fight, pilot programs around the country are already testing how best to serve people with disabilities using managed care concepts, both for acute and long-term care services. Managed-care providers are already talking about "carve-ins" or "carve- outs" of specific disabilities; talking about integrating acute and long-term care needs; debating whether entrance into the managed care system should be voluntary or mandatory.

The economic imperatives that fuel the managed-care train today are too powerful to stop. Even if managed care changes its look, a "managed care" (read: "save money") approach will soon subsume the whole health care delivery system. The disability community must deal with this issue directly and not stick its head in the sand and hope it will go away. The question isn't "if managed care..." but what managed care will look like as we move into the 21st century.

So: what role does the disability community want to play in this managed-care delivery system that's upon us? What role will the disability-rights and independent-living community play in the long-term care/personal attendant service delivery system when people with disabilities start being absorbed into managed care programs around the country?

Unless we people with disabilities are at the table telling managed care corporations what concepts we want in a health care delivery system; unless we ourselves start the process of becoming what I call "empowered service deliverers" ourselves, we will find that we will continue to be at the mercy of health care providers who understand little about our functional support needs, and even less about the independent living philosophy.

"Empowering Service Delivery" is my name for an old concept. Since the beginning of the independent living movement, the challenge has been to put independent living philosophy concepts into the larger systems--and only provide services on an interim basis till the larger system has changed. ESD is an interim step I propose we take till the larger long-term care/personal attendant service system embraces independent living concepts.

This approach to changing the current service delivery system would have independent living centers become service providers--and put the independent living concepts of choice and control into operation through a delivery system: independent living centers as deliverers of long-term care/personal attendant services.

Although there's been a lot said and written about how people with disabilities can individually become more empowered, there's been very little said about how the delivery system itself can become empowering for people with disabilities.

The disability movement has often--and for good reason--cast the delivery system of nursing home, "home health" and ICF-MR providers as the "medical-model" enemy of disabled people. Though this is true, changing that "medical model" from outside has been a slow process. "Empowering Service Delivery" would allow us to expand our strategy to advocate for changes in the larger system from the perspective of a progressive insider.

The disability community needs to take a lesson from other minority groups who have effected change by taking economic control of their neighborhoods. We, people with disabilities need to take economic control of our "neighborhoods," too.

To racial minorities, "taking control of the neighborhood" meant taking economic control of the system that delivered goods and services to their own communities; by doing this, they gained control over what happened in their communities, and also brought their own cultural perspective to the community. Since people with disabilities all don' live in one neighborhood (unless you consider nursing home and other institutions "neighborhoods"), our "taking control" must take another form.

The analogy works like this: people with disabilities should take over the pieces of the health care delivery system that for years have controlled our lives. Independent living centers should become delivers of personal attendant services.

If a person with a disability calls up an independent living center today and wants to get out of an institution, what can the majority of them offer? Classes? Information and referral? Peer counseling?

To begin the process of becoming independent, that person first needs to be able to get out of the institution. Being able to get someone out of an institution--or keep someone out--is truly what the independent living movement is about.

If we don't provide ESD ourselves, consider what "providers" we have to battle: The American Health Care Association--the nursing home providers. The National Association of Home Care--the "home health" service providers. Other professionally-driven health care providers: Occupational therapists. Physical therapists. Social workers. Psychologists. And on and on.

Disabled people are always on the outside--we're the "crop" for a lucrative, profit-driven health care system that harvests billions of dollars from us (or our Medicare, Medicaid or insurance companies)--based on their definitions of our needs. ESD allows us to directly confront the paternalism in the existing system and make changes from the inside. It also puts some of that money back into our organizations, money which can then be used for advocacy efforts such as enforcement of the ADA, affordable and accessible housing and community organizing activities.

The traditional disability rights movement's response has been simply to shun the "medical model": make believe it doesn't exist and attempt to totally bypass the delivery system. An agency model, even one that might be progressive, has been shunned. The model promoted was one where individuals would hire their own attendants and, in essence, run their own "service delivery system" by being in charge of one--or more--attendants, managing their funds, reimbursement and all the rest.

This traditional independent-living movement approach to how personal attendant services should be delivered may work for some individuals who have the desire and skills to run things on their own. But for the vast numbers of people who have disabilities, it's just not working. Sticking to this one approach to personal attendant services delivery will not meet the diverse needs and skill levels of the disability community. Independent living centers need to develop a complete service delivery system for personal attendant services.

Let me give you an example of why we need a delivery system in place: The U.S. delivered tons of food to the docks in Somalia to help feed starving people--but at that point it wasn't real "food" to the people of Somalia. Until it got to the people, it might as well have been cardboard. There had to be trucks found to move the food into the villages where people lived. Somebody had to load the trucks. Somebody had to drive them. Gasoline had to be found to fuel the trucks. Somebody had to decide what food went to which villages. Once there, somebody had to unload the trucks. All of this is a "delivery system." Only after a "delivery system" was working did the food reach the people. There had to be a delivery system.

It's no different with delivering attendant services.

Right now, the vast majority of attendant services are provided by home "health" agencies. The disability community doesn't like that; we're not in control, and we view the agencies as coming out of the evil "medical model." The bottom line, though, is that without an alternative delivery system in place, people with disabilities are at the mercy of the home health industry. In some states, a few disabled people manage their own attendants and avoid this; they participate in tiny programs that use vouchers, "fiscal agents" or "direct pay" programs.

But although these can be effective ways to have control over the services, it's been shown they don't work for the vast numbers of us who need some sort of a delivery system to deliver attendant services.

Many people with disabilities use the traditional "medical-model" delivery systems already in place because there are no alternatives available. An ESD alternative would give many people with disabilities the alternative they have been looking for--a program run by and for people with disabilities instead of "business as usual" the home-health agency way.

Delivering personal attendant services in an empowering way means interjecting independent living principles into the delivery system. Under such a system, disabled people would be able to select, manage and dismiss their own attendants. If independent living principles were at the basis of the delivery system, the "health" services that often go along with delivery of attendant services wouldn't have to be delivered by a doctor or nurse as has traditionally been done; they could be delegated or "assigned" by a nurse or doctor to a qualified but unlicensed person. Services would be designed to enhance the person's ability to function in the community, rather than to "fix" or "cure" the person.

If the independent living movement were to take over the delivery of personal attendant services, we wouldn't have to be "just like the current system," as people fear. We'd bring the disability community's unique perspective of choice and control to the hands-on delivery of services.

Through the concept of "empowering service delivery," the disability-rights and independent-living communities could change the way attendant services are delivered. We wouldn't be traditional "home health agencies"; we could change our names and call ourselves Home and Community-based Support Service Agencies--or HCSSAs. Our philosophy would shape the service delivery system.

HCSSAs would be consumer-driven. They'd be as non-medical as possible. They'd work with people with disabilities instead of against them. People who wanted total control over their attendants would be able to use the HCSSA as a "flow-through" for the money they paid their attendant so the HCSSA would be able to provide a consistent system for accountability to the funding source. Our concepts of choice and control would permeate the traditional system. Our presence could assist advocates working to change the larger home health industry.

Yes, it's true that HCSSAs could succumb to the same pressures that home health agencies say they're up against. Sometimes the consumer of services might get angry at us, too. The truth is that it's difficult to deliver any service competently all the time--including personal attendant service. Yes, we'd make mistakes. But having the agency based on the independent living / consumer-driven philosophy would be some protection against our becoming co-opted by economic and political pressures in the traditional sense.

Though HCSSAs may not be the total answer to changing our traditional delivery system, if the independent living movement moved in this direction many people who are in nursing homes and other institutions would finally be able to live in the community. This is real independent living.

As "empowered service deliverers," HCSSAs could be there to provide community-based personal attendant services when a person is coming out of a hospital or rehabilitation facility as well as the other services provided by the independent living enter.

Managed care entities are grappling today with how to move people from "acute" environments--hospitals, rehab facilities--into the community. Independent living centers have the answer to this problem: they can--as they've traditionally been supposed to do --not only provide the personal attendant services, but also locate accessible and affordable housing, information on assistive technology and offer a range of other services which most of our centers provide today anyway.

An "empowered service deliverer," armed with the ability to deliver actual services, would provide the individual the ability to truly become independent and a way to become active in the community.

Delivering services in this way can be efficient and cost-effective. Filtering out the over-medicalization of services has been a goal of the independent living movement for years. Independent living centers as "empowering service deliverers" can prove to managed care organizations, through their effective use of a non-medical and more efficient model, that the medical model is costly and doesn't work nearly as well as the independent living model

. The Topeka Independent Living Center, the Atlantis Community in Denver and Liberty Resources in Philadelphia have been providing cost-effective personal attendant services for many years. These centers show that ESD can work. These centers also have a reputation of doing aggressive advocacy work. They show that services and advocacy can go hand in hand.

Unnecessary case management, and too many professionals in our lives, are also areas where cost savings wouldn't be a dirty word. Many of our Medicaid waivers are based on the idea that we are "broken" and that professional services can "fix" us. With ESD, independent living principles, rather than "medical model" concepts, would form the basis for evaluating whether a particular service would be of "benefit" to a client. Rather than seeing a client as someone to be "fixed," it would see a client as someone who needed services to function in the community. The measure of a service's success would not be a medical professional's evaluation; the measure of success would be in how well the clients are able to go about their lives in the community.

Infiltrating the health care delivery system from within, as well as pushing for change from the outside (as we've traditionally advocated) are not strategies that need be mutually exclusive. The independent living philosophy that spawned the independent living centers of today needs to progress to the next stage nd truly "empower" the delivery system itself. This is the next evolution of the independent living movement.

HCFA, DOJ and the ADA

"Freedom is now within our reach" say ADAPT activists. Both the Department of Justice and the Health Care Financing Administration (HCFA) have issued letters insisting states' Medicaid programs comply with the Americans with Disabilities Act. Recent ADA lawsuits have showed this means funds must be used to let people live in their homes rather than nursing homes.

A July 6 letter from DOJ Civil Rights Division Chief John Wodatch to ADAPT organizers Mike Auberger and Bob Kafka says a "fundamental requirement" of the ADA is that states "administer services . . . in the most integrated setting. . . ." On Aug. 3, HCFA Director Sally K. Richardson issued a letter to state Medicaid directors reminding them of HCFA's "commitment to and responsibility for ensuring compliance with" the ADA, adding that "if necessary, HCFA will refer matters to the . . . Department of Justice for legal action." The letter's online at http://hcfa.gov/medicaid/smd8398.htm.

Readers wanting specifics on using the documents' strong words to get folks out of nursing homes can call the Topeka Center for Independent Living for how-to information. The toll-free number is 1-800-443-2207.

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