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New options for long-term care.

When someone with a disability needs long-term help with daily tasks like dressing, bathing, cooking, and getting clean sheets on the bed, where can they turn? Some rely on family members, or, if they can afford it, they hire personal care givers. Going into a nursing home is particularly problematic for younger and middle-aged people who want to keep as much decision-making power, independence, and autonomy as possible. With so few choices, many people simply do without the care they need.

Better solutions are sorely needed. The Society's Long-Term Care: Community Living Options Committee is closely watching the progress of 3 models of long-term care, designed to fit several economic levels.

Home placement

Three New York State chapters are working with CarePlus, a managed care company, on programs for young adults with MS who are eligible for Medicaid. Funding is through a Medicaid waiver program grant, which will allow alternative use of Medicaid funds. One plan would provide long-term services for a person in her or his own home, services not approved under usual Medicaid rules. The other would develop assisted living facilities for people who need more services.

The New York State chapters recently completed a survey about service needs that will shape these programs.

Personal assistance cooperative

This cooperative idea came about when a group of people, with a variety of disabilities, found themselves living in the same condominium in Virginia. The group wondered if each person would benefit if they pooled their financial resources and shared the services of a personal care attendant. They formed a cooperative--the Greater Independence & Mobility Project (GIMP). GIMP members sign up for the assistance they need on a biweekly basis, paying for these services by the half hour. So far, their experiment has been a success.

So successful, in fact, that 2 of the co-developers, Laura Cooper, Esq. (author of our column "Shrewd Moves...") and Maria M. Kear, Esq., published a manual explaining many of the legal, financial, and practical issues involved in forming such a cooperative. This is a model for productive, middle-class people who want to maintain independence. Like any cooperative, it requires strong leadership and commitment. The manual is available from Clinical Programs, National MS Society, 733 Third Avenue, 6th Floor, New York, NY 10017.

The Society is investigating ways to begin more personal care cooperatives on this model, including collaborations with the Social Security Administration, the Department of Housing and Urban Development, and the Department of Health and Human Services.

Privatized assisted living

The Kentucky and Colorado chapters are participating in demonstration projects with Atria Communities, Inc. Atria is a successful business that develops and administers private long-term housing communities across the country, mainly for elderly people. In response to calls from members who wanted long-term care assistance outside a nursing home, Christi Medley, president of the Kentucky Chapter, contacted Atria about including residences for younger adults with MS. Atria jumped right in.

The Atria housing communities in Kentucky will have a wing with 10 apartments designated for people with MS who can maintain independence, but need some daily assistance. Communal meals, housekeeping, laundry services, and staff attendants will be available to everyone. Participants can choose between 3 levels of personal care--with monthly rent, meals, and services charges ranging from $1,950 for basic care to $2,600 for comprehensive care.

This program is targeted to upper-middle income people. When the Kentucky Chapter informed its members about the Atria project, they got back 235 interested responses. But only 50 could meet Atria's financial requirements.

Home sweet home

No one wants to be "warehoused" in a nursing home facility just because they have a physical disability. No one should have to sell their house or divorce a spouse because that's the only way they can afford long-term care. No one deserves to be left lying in bed each day, without food, unable to use the toilet, until a spouse or family member finally arrives home from work to attend to them.

We need more new ideas, more innovative solutions, more alternative funding. The Society will be watching the development of these projects, and working to find other kinds of support for the needs of people with MS.
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Publication:Inside MS
Date:Jan 1, 1999
Previous Article:Dr. Anne Marie Riether's achievements recognized.
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