1. Should 25% of the Medicaid funds that nursing homes receive be redirected toward attendant care programs?
Yes. Our long term care system has not kept pace with our society as a whole. The entire system is biased toward nursing homes and other institutional services. Twenty five years ago these services seemed like the answer, but today we know better. Yet we currently spend about six dollars on nursing homes for every one dollar we spend on home and community-based services. Every state which receives Medicaid must provide nursing home services, but there is no similar requirement for home and community-based attendant services. People do not want to live, or have family members live, in nursing homes; and overall, community-based services are more cost-effective. At least 25% of people in nursing homes could live in the community if the support services were available, but in many, many cases those options are not available because the dollars are not available. Even the most severely disabled individuals (ventilator users, folks who are fed by tubes, etc.) are able to thrive in their own homes in the community; but these are the lucky few. Funding is limited; people do not want to pay more taxes to pay for more services. Given fiscal restraints and changing attitudes, technology and environments, redirection is the logical choice. We should not be wasting dollars forcing people into outdated service systems when better options are available.
2. Are nursing homes providing a disservice to people with disabilities?
By taking the lion's share of long term dollars, suing using the Boren Amendment, and lobbying for rules which favor them, nursing homes perpetuate the institutional bias and force people with disabilities to be warehoused in order to receive needed support services. In addition, look at the effect on the life of the person who must live in a nursing home. A quarter century of exposes and reforms have not made a significant dent in the many abuses which occur in this industry. Even the nicest institutions operate, ultimately, for the convenience of the facility and those who run it (look at hospitals, the army, jails, etc.) As many ADAPT members who have escaped from nursing homes have said, "your life is not your own." Your decisions, ability to come and go, sexuality, privacy, your control of your life are all restricted, if not eliminated. Seen and treated as a patient, not a person, you are de-humanized. Disability rights are based on the idea that, as people with disabilities, we may do things differently, but we are not broken people waiting to be fixed. This is the antithesis of the medical-model on which nursing homes are based.
3. How successful has ADAPT's strategy of targeting nursing home association meetings been so far?
This very successful strategy is intended to hold accountable those who work to maintain a system which de-humanizes some people for the profits of others. It makes people focus on the current long term care system and why things are the way they are. ADAPT members, many of whom have themselves been warehoused in nursing homes, are saying we will not let business go on as usual, there is a problem here that has been ignored too long. As the nursing home industry becomes more and more dominated by large, for-profit corporations, the need for change becomes clearer and clearer. The complete inflexibility of the American Health Care Association, and their continuous refusal to vote on the resolution ADAPT has given them, shows their resistance to change and underlines their huge part in the problem.
4. Is there anything else you'd like to add?
This is not an old versus young issue; you do not go to a nursing home because you turn 65, or even 80 years old. You go because you acquire a disability (perhaps due to the aging process) which requires you to have assistance to do daily living tasks.
People who have had to live in nursing homes say they would rather die than go back. They do not say this lightly. We should not be forcing people into a system for the profits of others. A national attendant services, such as ADAPT proposes, would allow choice and dignity.