ourhomes

Our Homes Not Nursing Homes: The Need for In-Home Attendant Services

In this paper, I will attempt to define the term “attendant services,” give a brief history of this issue, and tell what is happening with attendant services today.
What are attendant services?
Attendant services are services provided to people with disabilities and senior citizens. These services include, but are not limited to bathing, cooking, cleaning, and feeding. The people who perform these tasks are known as attendants, or PCAs (Personal Care Assistants) and they can either have formal training through a school or home health agency, or nursing home, or no training at all. Though most states require attendants to be licensed, the person requiring the service still needs to train them to handle their specific needs.
Why Attendant Services?
Most people regard people with disabilities as sick or ill. However, most people with disabilities are very healthy, rather, certain body parts may not work well or at all due to the disability. A friend once described it to me this way: “Our bodies are like a car. When parts wear out or no longer work, we get it fixed, or we deal with it. The doctor is a mechanic who makes a diagnosis or gives us a tune up. We, as disabled people, may need extra tune-ups here and there, but we’re really no sicker than the average person is. The attendant just helps us take care of the parts that we normally would do ourselves if we didn’t have the disability.” In other words, since the person with a disability is not sick, there is no need for a doctor or nurse when an attendant, even with minimal training, can perform the tasks that the person needs to have done.
A bit of history.
Attendants have been around for years. Anyone who has helped their sick mother in and out of bed, or has reminded their little brother to take his medicine every day, or even helped Mrs. Jones with the weekly shopping is providing attendant services whether they know it or not. Most people don’t realize this because of our society’s penchant for medicalizing anything that has to do with people with disabilities.
The history of attendant services began in the early ‘60s and is closely tied to the Independent Living Movement, which had its earliest beginnings in 1962, when Ed Roberts, a man with polio, entered the University of California at Berkeley (Shapiro 41-45). There were no accessible facilities in the dormitory, so Roberts was placed on the third floor of Cowell, the university hospital. There, his brother and some of his friends helped him get dressed, did transfers from the wheelchair to his iron lung and back, and pushed him to his classes and elsewhere around campus. Soon, twelve other students with disabilities joined him in his “little dorm,” and they formed a group called the Rolling Quads. They set about trying to make campus life easier and barrier-free winning several small victories including a commitment from the city to spend fifty thousand dollars a year to ramp the city streets (Shapiro 47).
In 1968, the dormitory became an official program ran by the department of Rehabilitation (Shapiro 48). Other students with various disabilities joined the program, renamed the Physically Disabled Students’ Program, and it grew to include over one hundred students. It was about this time that Roberts and the original Rolling Quads began to think of moving out of Cowell and into the community. They formed carpools to help others look for wheelchair-accessible apartments, brought together a pool of attendants to help them with the things that they couldn’t do, and began to help other disabled students find apartments. They opened an office and called it the Center for Independent Living with Ed Roberts as its head; this was the beginning of the Independent Living Movement.
Who is the typical recipient of attendant services?
The typical attendant service user is a person with a disability or senior citizen who needs help in several areas: getting out of bed, bathing, dressing, and cooking. Some people may need less help than others. For instance, they may be able to get out of bed and bathe themselves, but they may need help dressing themselves and fixing a meal. Others may need help in every aspect of independent living, yet they are no less worthy of community living than the senior or disabled person who needs no help at all is.
Where are attendant services available?
Attendant services aren’t available everywhere. In fact, there are only twenty-three states that offer any kind of home health services at all (Auberger, Michael. Personal interview. 24 October 1997). Each state also has different programs with different funding sources and eligibility requirements. For instance, some states require that one needs to be deficient in at least three ADLs or Activities of Daily Living such as dressing, bathing, or cooking. Other states say that if one is incontinent or confused, that they must be placed in a nursing home even if attendant services are in place. I, myself, was almost sent to a nursing home twice. The first time was in 1992, when I was hospitalized for intractable seizures. When the doctors found that I was legally blind as well, they tried to put me in a nursing home “for my own safety” even though I was living in my own apartment. Earlier this year, a mental health agency tried the same thing, citing “safety issues.” ADAPT had to intervene so that I could remain at home.
Why attendant services? Why not a nursing home where my loved ones are safe?
According to the World Institute on Disability (WID), nursing home care can be 30%-60% more expensive than in-home services (WID in Just Say No To Nursing Homes. Atlantis Community/ADAPT pamphlet. 1996). AHCA, the American Health Care Association, the most powerful nursing home lobbyists in the country quotes these same figures as well. The reason that nursing home care is so expensive is that nursing homes have to pay for the expensive overhead costs as well as doctors and other medical personnel that they hire and they pass that on to the patient or the patient’s insurance.
I worked in a nursing home in a small town in Northern Michigan for two months several years ago and I know from personal experience that a nursing home just simply isn’t the answer. I witnessed all kinds of abuses, from aides yelling at patients and leaving them in their own waste to nurses actually hitting and drugging patients that they considered hard to handle. Everyone ate the same meal of pureed food. The place reeked of urine. Many of the patients had terrible bedsores from constant neglect. Up front, where visitors were likely to sit, it was nice and clean. However, in back, where patients stayed, it reeked and was rarely clean. Most people think that a nursing home is for old folks but actually, nursing homes exist solely for disabled people—whether disabled by accident, illness, or old age. Seniors who are active and can take care of themselves with little or no assistance usually don’t wind up in a nursing home. My godmother who is ninety-two years old lives in a comfortable apartment in Chicago and needs no help at all. When she fell and broke her hip last year, the doctors wanted to put her in a nursing home because she would have required some help doing things around the house. To avoid this, she stayed at a friend’s home until she was able to care for herself again (Mayer, Anne. Personal Interview. 27 October 1997).
Though most senior citizens would prefer to remain in their own homes than be in a nursing home, many seniors have come to expect that they will go to a nursing home when they are no longer able to care for themselves. This has been true every since 1965 when President Lyndon Johnson initiated changes in the Social Security Act which brought Medicaid and nursing homes into existence (Kafka, Bob. Personal Interview. 22 October 1997). At first, only the rich could afford to send their loved ones to a nursing home, but over time, nursing homes began accepting all forms of insurance. Also, since they began finding it profitable to accept Medicaid insurance, most nursing homes have gone from ritzy country clubs to send Mum and Dad to spend out the rest of their “Golden Years,” to snake pits which are nothing more than warehouses for the dregs of society. Medicaid typically only reimburses a small percentage of costs and fees, so these nursing homes usually cut corners and have as their patients, people with little or no medical needs. Since it costs little to care for these people, Medicaid often will fully reimburse the nursing home, which then profits. If a patient has significant medical needs, such as ventilator care, most nursing homes will not accept the patient because expenses are too high and Medicaid will not reimburse the full cost of care. In my work at Atlantis, I have visited many nursing homes responding to calls from residents who want to leave, or who want to report cases of abuse. Unfortunately, they all seem to be alike, from the same reek of urine, feces, and disinfectant to the suspicious attitude of the staff towards visitors. I have spoken to senior citizens and people with disabilities who would rather die than go into a nursing home. Many of my friends who have been in nursing homes have told me that they would kill themselves if faced with the possibility of returning to one (Roberts, George. Vincent, Kathy. McColm, Frank. And Finnell, Carolyn. Personal Interview. 24 October 1997). This is due to the fact that in a nursing home, one eats, sleeps, and gets up when the nursing home decides, not when one wants to. There is often abuse, and thefts are common. Retaliation against complainers and punishment for minor infractions are a given in most nursing homes; consider the case of one woman, Kathy McGee, who was placed in a six foot by six foot cage at Heritage House, a nursing home on Denver’s West side. The reason? She ordered a pizza in defiance of the nursing home rules against ordering out for food. The same punishment was meted out to another woman, Lahoma Osbourne, for swearing. (McGee, Kathy. Osbourne, Lahoma. Personal Interview. 26 October 1997).
Independent living isn’t for everyone either. Some people prefer to live in a nursing home or assisted living environment. Others don’t like the idea of strangers coming into their homes. There are some folks who have heard the horror stories of attendants who have robbed or abused their clients, and they would prefer not to take that chance. A particular nursing home may be a decent one, and the person may like it there. Many people don’t realize that other options exist. Some people have medical circumstances so unique that nursing home care is required. Also, there are some people out there who are so used to the idea of a nursing home that it is all that they can look forward to. They like the idea of living in an environment where there are senior citizens only and where they feel that they are safe. I feel that it is up to us activists to show folks that even with the risks, independent living can be for everyone. Even people with severe medical conditions can remain in their own homes. I knew a man, Jim Lundvall, who was a client of Atlantis Community, a home health agency and Independent Living Center where I worked as a Community Organizer for ten years. Jim, who was a quadriplegic, was in bed asleep when someone set fire to his home. He suffered from smoke inhalation and lapsed into a coma. Since Jim had previously asked to remain at home if anything happened to him, Atlantis found him a new apartment and set up round the clock attendant services for Jim even though he was in a coma. An attendant was with him at all times. They took him to the park and to all his favorite hangouts. They talked to him and played his favorite music. Jim’s parents visited him often and helped with his care. Though he died a year later due to injuries from the fire, Jim was able to remain at home even though he was in a coma. This was the most unique situation that I have ever been involved in and I have seen it work. I am truly convinced that anyone can live independently as long as it is his or her choice.
What is happening now?
Because many people are making the decision to remain at home and live independently, attendant services are becoming more and more common. In January of 1995, members of American Disabled for Attendant Programs Today (ADAPT) came together to write a bill requiring that twenty-five percent of Medicaid funding for nursing homes be redirected into a national uniform attendant services program. To do this would require only an amendment to Title XIX of the Social Security Act to provide for the coverage of community based attendant services under the Medicaid program. As an ADAPT member, I was present at this meeting and participated in the writing of the bill. Known as the Community Attendant Services Act (CASA), the bill requires that people get attendant services based on functional need, not medical condition and that people of all ages are eligible for services as most home health agencies do not provide services to anyone under age eighteen. The definition of attendant services would be broadened to include other services such as balancing a checkbook for a person with Mental Retardation, or simply checking up on a client’s safety if that is all they need. The bill also requires that people be given the choice of hiring, firing, and training their own attendants, or working with an agency. The bill would allow the client to have as much direction in their services as they choose, and would also allow for cost sharing, if that is possible. Under the bill, a person will be able to receive attendant services on the job. Previously, this was not the case. Under the law, a person is required to be home bound a certain number of hours a day, so working is almost impossible for someone with major attendant service needs. Atlantis Community, in conjunction with the state Office of Vocational Rehabilitation, has a pilot program where students and employees receive attendant services on their job or at school. Attendants are scheduled to go to the job or school site and help the client with lunch, toilet, or other needs. There are 22 people currently enrolled in this program (Auberger, Babs. Personal Interview. 23 October 1997).
For over two years, ADAPT worked to educate people across the nation about the proposed bill. I remember mailing hundreds of postcards to various social agencies and interested citizens across the nation and around the world. We would mail them the post card offering to send information about ADAPT and attendant services as well as a copy of the proposed bill. We received literally thousands of responses. I personally mailed at least two hundred and fifty copies of CASA. We educated senators and Congresspeople about the bill and searched for sponsors. We met with Donna Shalala, Secretary of the Department of Health and Human Services, and President Clinton. We also met with Paul Wilging, president of the American Health Care Associates, the most powerful nursing home lobbyists in the country. Needless to say, they were less than enthusiastic about the proposed bill. Since most states that receive Medicaid funding are required by law to divert a large percentage of the funding to nursing home care, the nursing home industry would stand to lose a lot of money if this bill passes. They claim that we are “robbing Peter to pay Paul” by diverting funds from nursing home care to community based attendant services. However, they offer no viable solutions to nursing home care.
We also met with House Speaker Newt Gingrich, who agreed to introduce the bill. On June 24, 1997, Speaker Gingrich introduced the bill in the House of Representatives. CASA is now H. R. 2020, known as the Medicaid Community Attendant Services Act of 1997, or MiCASA. If MiCASA passes, it will allow people with disabilities and seniors who were formally warehoused in nursing homes to become free and contributing citizens to our society, and the only folks who will remain in a nursing home are those who choose to.

Works Cited

Auberger, Babs. Personal Interview. 23 October 1997.
Auberger, Michael. Personal Interview. 24 October 1997.
Finnell, Carolyn. McColm, Frank. Roberts, George. Vincent, Kathy. Personal Interview.
24 October 1997.
Kafka, Bob. Personal Interview. 22 October 1997.
McGee, Kathy. Osbourne, Lahoma. Personal Interview. 26 October 1997.
Mayer, Anne. Personal Interview. 27 October 1997.
Shapiro, Joseph. No Pity: People With Disabilities Forging A New Civil Rights
Movement. New York: Random House, 1993.
World Institute on Disability (WID) in Atlantis Community/ADAPT. Just Say No To
Nursing Homes. Denver: ADAPT, 1996.

I hope you found this paper to be of interest. For more information on the Medicaid Community Based Attendant Services and Supports Act (MiCASSA), click here.

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