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7/30/98, 6:51 am
Empowering Service Delivery:
Evolving Home Health for the 21st Century
by Bob A Kafka
As the 21st century arrives, the delivery and funding of home and community based attendant services to people with disabilities, regardless of age or disability, will continue to be one of the most critical issues facing the traditional disability, aging and home health communities.
The current inefficient, over-medicalized, fragmented and under-funded delivery system only intensifies the unmet need that exist in the current system. The unmet need will continue to grow into the next century, as the number of people needing services increase, as the fiscal conservative political environment prevails, and as aversion to national solutions at the expense of state flexibility continues. What is needed is an overall national strategy on how we fund and deliver home and community based long term services, taking into account all of the above factors.
One of the major political problems we confront is how we look at the issue of long term care services. The issue of long term services is always discussed in the context of the health care debate. From a historic and pragmatic point of view this, at first, seems to makes sense. Medicare and Medicaid funds, the public dollars that have been used for over the last thirty years to develop the current long term service system, are medically driven funding streams.
Whether it is Medicaid waivers, Home Health services, Personal Care, Frail Elderly, Intermediate Care for the Mentally Retarded or Medicare Home Health, these programs have made up what we call our home and community based long term service system.
Though home and community based service options have expanded over the last ten years, when combined, all the programs mentioned above make up only about 25 percent of the total Medicaid long term service dollars spent in 1997. The bulk of long term service dollars continue to go to institutional programs like nursing homes and Intermediate Care Facilities for the Mentally Retarded -- even though the public overwhelmingly prefer services provided in their own communities.
Medicare Home Health, which is now being clamped down on by the Clinton Administration, was never meant to be an ongoing long term service option when it was first created in the 1960's. People with disabilities, old and young, realizing there were no other public options for long term services unless they qualified for Medicaid, have attempted to make Medicare funding work to meet their otherwise unmet long term service needs. The Medicare Home Health benefit is an expensive and inefficient way to meet chronic ongoing needs of people with disabilities, old and young.
These attempts to use any available funding source for ongoing supports illustrate the need for a new approach to delivering long term services in this country.
Looking at the problem as a health care reform issue has two major problems. One, long term services get lost in the debates about doctor and hospital reimbursement, managed care issues and the myriad of other acute medical needs of the general U.S. population. The other problem is we lock ourselves into tinkering with the medical model instead of looking for a broader social/independent living model solution to the long term services issue. Fixing Medicare will not solve the long term services dilemma.
Nor will fixing Medicaid. We must stop rearranging the chairs on the deck of the Titanic and recognize the ship is sinking. The challenge is not to go down with the ship but to design one that won't sink.
Long term services must be carved out as a political issue unique to itself. Long term services must be seen primarily as an ongoing support need of an ever growing number of people with disabilities -- old and young, that has as one of its component, health maintenance/medical needs. The debate needs to be moved from Medicare/Medicaid reform to a national commitment to developing a long term services funding and delivery strategy for this country.
One of the first steps is to recognize and collect data on the changing mental and physical characteristics of the US population. The demographics of our country are changing. There is much written about the aging of America, but little discussion about the growing number of young adults and children who because of medical technology, rehabilitation techniques and new drugs are now living normal lifespans with disabilities. Older people, young adults and children with disabilities -- not to mention their families -- all clamor for long term services; and the vast majority of these individuals and families want these services delivered in home and community based settings.
Until there is the political recognition that the battle for the Americans with Disabilities Act and other disability rights laws, the battle for inclusive education and the pressures on Medicare and Medicaid are all part of the bigger picture of the changing mental and physical characteristics of the normal American, there will never be a comprehensive change in how long term services are funded and delivered.
What would the home health agency of the 21st century look like in a new social model delivery system? In a social model the agencies delivering services would not primarily see themselves as home health care providers but providers of home and community based services that include health maintenance/medical services.
Instead of being called Home Health agencies, organizations delivering home and community services could be called Home and Community Support Services agencies. Medical/health services would be an adjunct of ongoing support services -- instead of the other way around.
However, changing the name will not, in and of itself, change the way Home Health services are conceived and delivered. Home health services are a creation of the medically oriented Medicare/Medicaid funding that primarily pays for the services. This has established a culture that looks at client through a medical prism: the client is sick. Though there is a growing recognition in the Home Health industry of the need to embrace the social/independent living model for delivering community-based long term services and to begin the transition from the medical model to the social model, continual piecemeal attacks from the Clinton Administration have forced the industry to circle the wagons and try to protect what they currently have. Energy and attention have been diverted from looking what the components of a Home and Community Support Service Agency (Home and Community Support Service Agency) would involve.
There are certain principles that the disability community have been promoting that should be included in any home and community-based delivery system.
Principles
The concept of maximum choice and control of the services are at the foundation of the social/independent living model. The locus of control would be with the consumer of the services (advocate or guardian in some instances) not the agency. Individuals with disabilities would have the right to select who provides them attendant services, manage the hours they receive after assessment and be able to dismiss the attendant regardless of who is the employer of record. Too often choice and control have been the sole purview of the Home Health agency. This has led to a feeling of powerlessness of the individual and a low satisfaction with the quality of services delivered. By allowing the recipient to have more choice and control the agency becomes a support system that focuses on the total needs of the individual rather than seeing the person with a disability simply as sick, needing medical assistance.
Back-up and emergency services would be available to assure that there is continuity of services even if an attendant does not show up. Family members and some people with disabilities often choose institutional placement, not because of the individuals care needs but because of their perception that community placements might be unreliable and therefore unsafe. A beeper system or other back-up method would assure the individual will receive services in a timely matter. Only when a Home and Community Support Service Agency can assure these emergency and back-up services will be available will group/institutional settings will lose this edge as an option.
Another area that must be addressed as we move from institutional to community services is the availability of support services 24 hours a day, 7 days a week. Services not being available on week-ends or after 8pm are frequent complaints of the disability community, and frankly is ridiculous when you look at it from the point of view of just trying to live your life. Home and Community Support Service Agencies must find a way to meet this need. Working with the person receiving the services would result in creative solutions to the problem as well as send the message that the consumer of the service is the focus of the delivery system.
Another problem which is an outgrowth of the medical model, is that the current long term care system is fragmented, frequently based on disability labels or age. Home and Community Support Service agencies of the future must provide community supports based on need not labels. If you need assistance in an Instrumental Activity of Daily Living, like money management/check writing, why would it matter if your diagnosis was mental retardation, brain injury or Alzheimer's? Personal care services are needed by and should be provided to children, young adults and older people regardless of age of onset or cause of disability. The development of a functional assessment instrument that includes health related needs is critical in making this work. Our current assessment systems are usually based on mental or physical needs; none currently exist that look at the total individual.
Health-related or health maintenance tasks will be provided as an adjunct to the ADL/IADL's provide by the Home and Community Support Agency. Nurses will be able to delegate and/or assign to qualified unlicensed people performance of tasks such as: pill administering, bowel and bladder care, tube feeding, certain decubiti dressing and ventilator care. These tasks should be provided with the intent to have the person as independent and active as possible. Nurse delegation/assignment is a critical piece for the dismantling of the medical model.
There has been lots of discussion and concern about the loss of quality of care by allowing unlicensed people to perform health services. Yet experience in states where nurse delegation assignment is already occurring has not shown that there have been any significant problems. In addition, there are really two levels of protection built into such a system, especially in the more empowering service delivery of the future: first the unlicensed person performs the services under the delegation/assignment of a nurse, and second the person with the disability gets to select if she/he wants that individual performing the services.
Working with consumers and attendants as a team will build the community relationship that is so important in making living in the community a reality.
Voluntary training of consumers and attendants is a role Home and Community Support Service agencies can also play to assure quality services. Training should not focus so much on medical needs of the individual but rather on independent living principles, disability rights, body mechanics and how best to work with attendants. If the Home and Community Support Service Agency is seen as a support center for the family and disabled individual the relationship between client and agency will soften.
Finding attendants is becoming more and more difficult especially as unemployment figures remain low. Recruiting attendants must become a national priority for Home and Community Support Service Agency's. If a national attendant program should pass Congress tomorrow, or we could empty all the nursing homes and other institutions today, we would not be able to find the people to do the hands on work.
Obviously increasing wages and benefits is the best way to attract good workers. The conservative fiscal environment may make that solution difficult to implement. Creative ideas such as using people with certain types of disabilities to be trained as attendants is another approach. Cooperative relationships between Vocational Rehabilitation and the Home Health industry might produce jobs for people with disabilities and attendants for people with disabilities. Another potential source of attendants is to work with universities across the country to require medical, nursing, special education, occupational therapy, physical therapy students to serve a six months to a year internship as an attendant. Interns could be paid a stipend but the motivator would be a grade. Whatever our solution it is clear outreach for attendants will be essential if choice and control are to have any real meaning.
There are certain eligibility areas that the Home and Community Support Service Agency may have no control over. One of these is the ability for individuals to receive services based on a sliding fee scale, an important issue in the disability community. This would allow people of higher incomes who may be working to receive assistance without being financially devastated just because they need support services. The current on/off switch for support services based on income is a major disincentive to work because the limits are too low to really be able to afford to pay for replacing government funded services and yet giving these services up would be life threatening for many individuals with severe disabilities. Home and Community Support Service Agency services must be available for people who can private pay, those who can pay some and those who are very low income.
The transition from the medical model to the social/independent living model will not be easy. Over thirty years accumulation of rules, regulations and the related infrastructure is not easily dismantled.
The question isn't so much if it is going to happen, but when. Home and community based services WILL become the norm and institutional services WILL diminish. The national politics will eventually catch up with people's overwhelming preferences. The disability and Home Health communities could actually be natural allies in this transition, whether or not either of us recognize it now. Years of distrust, miscommunication and lack of communication must be overcome. This can be accomplished cooperatively by actively working together on legislation like the Medicaid Community Attendant Services Act, MiCASA, as well as working together to break down the institutional bias in Congressional funding and in the Health Care Financing Administration's regulatory bias for institutional placement.
Politically we are more powerful if we work together. To do this there must be trust. The Home Health industry must embrace the social/independent living principles as a smart way to conduct business. The baby boomers will want services in the community and they will want choice and control. The disability community must recognize that a consumer controlled agency model must be a CHOICE equal with vouchers and the fiscal intermediary models. People with disabilities must have ALL options in how services are delivered to them. One size does not fit all. The agency model is not inherently in opposition to the philosophy promoted by the disability rights movement.
Choice and control can be achieved in different ways and many individuals want an agency model that allows them to have choice and control but allows them to be free of administrative burdens, as well as giving some selection and back-up of attendants.
The challenge to both our communities is to find common ground and to work together to change the current long term care system that none of us like.
Free Our People! There's No Place Like Home!
by Bob A Kafka
June 8, 1998
The Memphis Center for Independent Living
1633 Madison Avenue,
Memphis, TN 38104
(901) 726-6404 v/tty (901) 726-6521 fax
mcil@mcil.org
MCIL is a United Way of the Mid-South member Agency
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