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Editorials


Health Care


Long Term Care Redesign

August 8, 1997

The Wisconsin Department of Health and Family Services is seeking comment from the public in regard to the preliminary proposal. See a summary of the "Proposal for Redesigning of the Long Term Care System" and where to send your comments to the DHFS. We need your input.

This letter focuses on that the reforming of the present long term care system should be to meet the needs of individuals who are disabled, that the system should be reformed with the input of the disabled individuals or their families and gives specific, critical but constructive suggestions for the system to understand thru representation, be responsible, fair, prompt and humane, and care.

An open letter to the State of Wisconsin Department of Health and Family Services in response to the "Proposal for Redesigning of the Long Term Care System" of Wisconsin, 1997.

The FOCUS of Long Term Care MUST BE on MEETING THE PURPOSE FOR WHICH IT WAS DESIGNED--to serve persons who REQUIRE long term care and provide those services in a FAIR, RESPONSIBLE, PROMPT and HUMANE way. The Long Term Care System can only accomplish this task by UNDERSTANDING the needs of the persons it intends to serve.

To REDESIGN the Long Term Care System, it must first be acknowledged that the system is NOT meeting the needs of the DISABLED PERSONS it was intended to serve; that indeed it is broken.

Once it is acknowledged that the system is not meeting the needs of disabled persons, then the system can be REFORMED, in a positive way, to meet those needs. The system must be DRIVEN by the disabled and their families and NOT designed to either perpetuate the old system that is broken, nor create a new government funded/service industry.

To UNDERSTAND the needs of the disabled persons it is serving, the Long Term Care System must have REPRESENTATION by the disabled and their families. THEIR INPUT IS ESSENTIAL.

Input by the disabled and their families should not be restricted to comments at a hearing on a plan developed by those who may have an interest in keeping the status quo. 68 of the 74 members of the three Long Term Care Initiative Committees, were representatives of agencies, organizations or the Department of Health and Social Services. The 6 remaining members were individuals REPRESENTING the disabled and the elderly--These 6 are less than 10% of the planning committee.

Why have those who require long term care not had a greater voice in redesigning the system?

Where is the REPRESENTATION of the disabled, their families and caregivers?

The disabled and their families are directly affected by the system. They are for whom the system was supposedly designed. They know what is needed. They deal with the everyday issues. They have the experience. They have the knowledge of the way things are. They live with the frustrations of dealing with a system that is broken and inaccessible. They know what needs to be changed in order to improve the situation.

Furthermore, REPRESENTATION and input by the disabled and their families is crucial throughout the entire planning process.

To REFORM, the Long Term Care System should adapt the following suggestions:

To UNDERSTAND through REPRESENTATION, the Long Term Care System must:

  • Have much greater REPRESENTATION of the disabled and their families on boards and study groups.

  • Create a vehicle for routine feedback from the disabled and their families.

  • Make the system accountable. Have the Legislative Audit Bureau do regular audits/interviews to determine the effectiveness of the system.

    To be RESPONSIBLE, the Long Term Care System must:

  • Distribute handbooks on long term care similar to those put out by Medicaid and Medicare which explain eligibility, what services are available, how to access the services of the system, rights, appeals, list of providers, definition of terms, including a written definition of emergency, etc.

  • Push for greater prevention of disabilities. This can ultimately reduce the cost of long term care for families and the state.

  • Make readily available information and counseling to enable families to do long range planning.

  • Inform applicants of other services they might be eligible for until COP funds become available and who to contact to obtain these services.

  • Incorporate housing for the disabled into long term planning.

  • Develop a pool of trained live-in aides for the disabled.

  • CAUTION: Managed care creates many risks for the disabled. If anything needs to be done, it is to pay those willing to work with the disabled--dentists, doctors, etc.-- for the additional time it takes to provide proper care.

    To be FAIR and eliminate DISCRIMINATION, the Long Term Care System must:

  • Eliminate the DISCRIMINATION that exists between care for the aged and care for the disabled.

  • Have an outreach program for the disabled similar to that which exists for the elderly.

  • Combine disabled and aging departments to assure equitable funding and services.

  • Establish assisted living programs for the disabled which are currently available only to the elderly.

  • Decrease the isolation of the disabled through greater recreational and social opportunities such as those available to the elderly. It is widely recognized that the elderly need recreational and social activity. Why has it not been recognized that recreational and social activities are needed for the disabled under age 60? Their isolation begins right after high school and frequently lasts a lifetime.

  • CAUTION: Managed care creates many risks for the disabled. If anything needs to be done, it is to pay those willing to work with the disabled--dentists, doctors, etc.-- for the additional time it takes to provide proper care.

    To be PROMPT, the Long Term Care System must:

  • Provide services based on the NEEDS of persons--not on the date of referral.

  • Respond promptly to phone calls from the disabled and their families (within 24 hours)

  • Automatically distribute notices of all rights.

  • Advise applicants of their status within 7 days of an assessment.

  • Provide regular respite care for the families caring for those disabled on waiting lists.

  • ELIMINATE the restrictions on the appeal process which denies consumers the right to appeal if Community Options funds are not available.

    To be HUMANE, the Long Term Care System must:

  • Be HUMANE.

  • Treat applicants with respect.

  • Be AWARE of the fact that when individuals come to them for help, it is most often under pressure of a desparate need. Most individuals and families will have already by that time exhausted their capacities for care and have already been driven for too many years by a sense of personal responsibility and love. The state cannot be a substitute for the caring that families provide. But caring has to be put back into caregiving.

  • Make available the kind of help that is needed--rather than a take it or leave it, this is all there is attitude.

    The Long Term Care institution/government funding system, as it exists today, is a defective machine and not an institution of human services.

    To REFORM, the Long Term Care System must put CARING back into caregiving.

    The Long Term Care system must be aware of the fact that when individuals come to them for help, it is most often under pressure of a desparate need. Most individuals and families will have already by that time exhausted their capacities for care and have already been driven for too many years by a sense of personal responsibility and love.

    Their intent to REFORM the system is only to find much needed CARE for the disabled. The state cannot be a substitute for the caring that families provide. CARING is an inseparable part of caregiving.

    To REFORM and put CARING back into caregiving, the government funded system must move closer to and listen more carefully to the disabled and the family caregiving system, who ultimately, will be passing this very critical responsibility on to the Long Term Care institution.

    To REFORM, the Long Term Care System must MEET THE PURPOSE FOR WHICH IT WAS DESIGNED--to serve persons who REQUIRE long term care and provide those services in a FAIR, RESPONSIBLE, PROMPT and HUMANE way. LISTEN and UNDERSTAND the PERSONS who REQUIRE the CARE.

    The Long Term Care institution should listen-- to the disabled and to those with this “first” experience--the family caregiving system

    Presently, you are not listening.

    LISTEN TO US!

    Signed

    A “first” caregiver

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