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A Disability Perspective on Home Health Care

by Stephanie Thomas

"It was the beginning of my life at 22 [years old]" Claude H. said of his move from a nursing home into his own place using community-based services. His experience is far from unique. "It was a hell hole, your life is not your own" said Karen G. of her 12 year stint in a nursing home. "I'd rather die than go back" numerous others say.

For many younger people with disabilities the growing trend toward in-home and community-based support services could not happen quickly enough. And the feeling is not confined to younger people. The push for community-based services is the direct and logical outgrowth of a disability rights movement that has taken off in the last 20 years.

One group leading the push for community based services is ADAPT (American Disabled for Attendant Programs Today). Started as a project of the Denver based home health agency and independent living center, the Atlantis Community, ADAPT's focus is to enable people with severe disabilities to get the support services they need to function independently out in the community, instead of being forced into nursing homes and other institutions to get these support services. In fact the Atlantis Community was founded in 1975 by group of activists, ex-nursing home staff and residents, who were bound to prove there was a better way to provide support services than institutionalizing people. Many ADAPT members have been willing to go to jail in the civil rights struggle for this freedom.

The traditional stance in our culture is that "normal" is the "Pepsi generation" version of youth and physical fitness, and anything diverting from this is an abnormality which should be corrected. In the disability community this is sometimes referred to as the "medical model" for service provision. As people with disabilities began to question this attitude, they also began to demand a place in society as equal citizens. As people sought the same things in life that their non-disabled peers were seeking and receiving, a new picture arose. They came to realize that disability, different from illness, is not a temporary state of abnormality, but rather is another way of being normal.

More and more people with severe disabilities are living in their own homes in the community. According to the research of the World Institute on Disability, W.I.D., almost eight million Americans need assistance from another person to accomplish every day tasks, and three million of them are not getting the assistance they need. A 1986 Lou Harris poll of people with disabilities found over half (56%) of those whose activities were limited attributed that limitation to a lack of attendant services. Of those who were able to get assistance W.I.D. found 79% must rely on volunteers. As our population ages, and, through medical advances, more people with disabilities are being kept alive these numbers will only grow.

Attendant services (also known as personal care assistance) are among the community-based services most critical to the independence of people with disabilities. The people who perform the assistance are called attendants. Attendant services include help with tasks like: dressing, bathing, eating, transferring, helping to keep a check book, or reminding someone to take a pill. As one disability advocate put it "if I can't get out of bed into my wheelchair, what good is my right to a ramp or to a job?"

While the majority of those who use attendant services are people with mobility impairments, many people with mental or sensory (visual or hearing) disabilities need these kinds of assistance too.

From the disability rights perspective age and diagnosis are really red herrings in determining who should get what service. The vital factor is functional need. You do not go to a nursing home or get a home maker automatically when you reach age 60, 65, 70 or even 90; you take this step when you need assistance with certain tasks, when you have a functional need. This need may have been brought on by the aging process, but if it is an ongoing limitation it is still a disability. Similarly there are those with almost any disability diagnosis who do need attendant services and those with the same medical diagnosis who do not need such services. In relation to attendant services and home health care, distinctions based on diagnosis are really convenient criteria government has used to limit the populations served under the programs for which it pays. What difference does it make that you need assistance transferring because you are a person with muscular dystrophy or a traumatic brain injury? Two spinal cord injured quadriplegics may need completely different kinds of assistance with toileting, depending on the differences in their physical abilities and differences in the accessibility of their environment.

Home health care provides many, if not all of the tasks included under the attendant services umbrella. Yet while many tasks are similar to those performed for acute care patients, since people with disabilities are not sick, the way care is provided needs to be different. In many cases there is a strong tension about traditional home health care providers delivering these services, because of the "medical model" approach providers often take.

Sometimes disability rights advocates have found traditional home health care to be institutional services in another setting. While this problem is in part due to antiquated attitudes about disability, it is also due to regulations and policies which are often based on these same outdated attitudes. The recent attempts by the nursing home industry to link themselves to the home health care industry only deepen the concerns of the disability community.

At the same time people began realizing disability was different from sickness, they began to realize that the independence and autonomy we all seek is tied to control more than to doing things by oneself. Today no one thinks a woman who works outside the home is not independent if she hires someone to do housework for her. As long as she decides what and when cleaning takes place she is still in control and independent. The same is true for people with disabilities who use attendants to assist with personal care and similar tasks.

From the disabled person's perspective an attendant is like their arms and legs, or memory. The services provided simply make up for the functional limitations the disability imposes. This is very different from the traditional provider view that health care professionals do things to patients, caring for people who cannot care for themselves.

Because rules and regulations are too medically oriented and too inflexible, there is not enough room for developing and implementing creative delivery systems. People with disabilities have worked very hard to develop alternate delivery systems, but -- primarily due to financial constraints -- these systems are able to serve only limited numbers of people who need assistance.

Control is one of the most important factors in service provision. People with disabilities want to direct their care and, for the most part, are able to do so. This direction, or control, applies to when, where and what assistance is given as well as how it is given. Familiar with their bodies and routines, people with disabilities know the best way tasks should be done. (Some people with cognitive disabilities may need more assistance, yet they --none-the-less -- want and need control of their lives.) Many people even prefer to train their own attendants because they feel this helps ensure the services they receive meet their needs, and not those outlined in a training manual.

One step some home health agencies have taken is to have the disabled person using the service, together with the agency staff, draw up a service plan which outlines what tasks will be done, who will do them, and how much -- if any -- supervision is needed; everyone agrees on the plan and signs off on it. Some agencies allow people to find their own attendants and then the agency hires that attendant to serve that person. Some agencies have the people using attendant services sign their attendants' time sheets.

Task that are seen as medical in an acute care setting can be handled less stringently in a home-based, on-going routine. While safety and liability are often concerns of providers, these concerns have ridden rough-shod over the disabled person's right to a life. What a provider sees as "inserting a foreign object into a body cavity," the disabled person sees as "going to the bathroom" (catheterization), or eating (tube-feeding). To people with disabilities, such tasks are simply activities of daily living. Instead of intervention at a point of imbalance in a persons life, as in acute care, many of these tasks -- in the life of a person with a disability -- are routine maintenance. It is just a different routine than those of people who are not disabled. In addition it is not a temporary situation, but a routine which will last a lifetime.

This is not to say that people with disabilities do not get sick from time to time, and may need more assistance including medical assistance, at these times, but that is a different situation from day to day living.

Just as you might grow tired of a nurse or other professional routinely checking up on your activities of daily living, so it is for people with disabilities. Restrictions to delivery of some kinds of attendant services by medical professionals is a direct result of equating disability with sickness.

In fact many of these "medical" tasks are routinely done by non-medical people: family members, people with disabilities themselves, some home health care providers and privately paid individuals. From G-tube feeding to decubitus care, from trachea cleaning to pill administration, even the most "medical" of tasks can and are being performed routinely and safely by qualified unlicensed attendants. The rub usually comes when public funding is involved; this creates a double standard in service provision. Ironically, Medicare will pay to train family members to do these tasks.

The ability to delegate "medical" tasks to non-medical, unlicensed personnel (who are perhaps supervised by a licensed person) would be a giant step in the right direction. Delegation lowers the cost of care, frees-up licensed people for jobs which truly require their skills, and normalizes service delivery. Although most states' nurse practices acts do not allow for such delegation, these acts can and have been amended (Texas, Colorado and Oregon are three examples of states which have done this.)

For a disabled person needing attendant services, consistency of care is also extremely important. As people with more severe disabilities are being served at home, they may want less medically oriented services, but that does not mean the quality of services can be lowered. home health providers are sometimes allowed, by state laws and regulations, as much as 14 days interruption of service. While this may work out tolerably in the life of someone who needs assistance with housekeeping, or even -- in more drastic situations -- help with bathing, there is no way someone can wait that long to go to the toilet, or transfer from chair to bed. Impaction and pressure sores can be deadly.

Emergency and back-up attendant services are also vital parts of consistent service. Attendants are rarely paid well, and even more rarely given benefits such as health insurance, vacation or sick leave. This leads to a labor force that is often less than stable or reliable. Yet the need for assistance remains stable. A person will need help getting up in the morning even if the attendant finds a better paying job or has a sick child. If a person needs help with routine care of his or her ventilator, that same person is not likely to sprout the ability to deal with the ventilator in an emergency situation. The need for emergency and back up services is especially great for less assertive people who use attendant services, as well as for people with more severe disabilities.

Another example of how current service delivery policies and practices hamper the move by people with disabilities into the mainstream of our society is found in where services will be delivered. Traditionally of course home health care\attendant services were delivered only at home, presumably under the assumption that sick people are the only ones being served. As people want to go to school, to work and other activities outside the home their needs for assistance do not stop at their front door. People often need attendant services in a variety of places in the community, but most service delivery systems do not address this need. Some providers have very successfully built in flexibility as to where services are provided.

The fight for community-based attendant services is at full pitch right now. Many states are cutting back on the limited services currently being provided. Cuts in dollars and rationing (like the Oregon plan) mean, at best, that fewer new people will be given services and, at worst, that people will find their service hours cut, sometimes to the point that they are forced into nursing homes or other institutions. Health care reform is an opening to improve the national bias toward institutional services; but long term care is one of the pieces most quickly chosen to be jettisoned.

Our national funding bias (both at the federal and most states levels) toward institutions is a major barrier to improving services. According to the Health Care Finance Administration figures, federally we spend six times as much on nursing homes as we do on attendant services. Also, while states which receive Medicaid funds must have nursing home services, there is no requirement for community-based services. Joint efforts by consumers and providers to promote community-based services at the state and federal levels could lead to improvements and a more equitable system.

In addition, however, the policies and practices governing home health care must be up-dated. Amending nurse practices laws to allow delegation of health related tasks will stretch our community funding as well as increase the flexibility of the system. Also some states, like Texas, have gone a long way in writing more consumer control into service regulations.

Beside changing government regulations, home health agencies can look at their internal policies. Looking for ways to allow more consumer control of services, to make service provision less medically oriented, to build more flexibility into how, where and by whom services are provided and to ensure consistency of service will better address the needs of the disability community.

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