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:
To be RESPONSIBLE, the Long Term Care System must:
To be FAIR and eliminate DISCRIMINATION, the Long Term Care System must:
To be PROMPT, the Long Term Care System must:
To be HUMANE, the Long Term Care System must:
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!
A “first” caregiver
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