If the purpose of the Long Term Care (LTC) Redesign is to more effectively serve people needing services, then there has to be a greater opportunity for consumer input.
However, consumers had little or no representation on three of the LTC Initiative Steering Committees:
Of the 25 members on the Developmentally Disabled Committee, all 25 represented either agencies, organizations or staff of the Department of Health & Family Services (DHFS).
Of the 25 members on the Aging/Chronic Condition Committee, 23 represented agencies, organizations, doctors or DHFS staff.
Of the 24 members on the Physical Disabilities Committee, 20 represented agencies, organizations or DHFS staff.
There was some very limited consumer input from Focus Groups.
There needs to be a greater opportunity for significant input from consumers needing long term care to express their experiences with the system, present their ideas on what is needed and to be certain their views are being recognized and included in the plan BEFORE any final plan is submitted or hearings are held.
There needs to be the same opportunity for input by family caregivers. The system should be drawing on this wealth of knowledge acquired through years and years of daily exposure and service.
If change is to be effective, the system has to be consumer driven.
This requires that consumers have a voice.
A “first” caregiver
The above letter was written in response to the Long Term Care Redesign project which was launched by the Wisconsin Department of Health and Family Services in November of 1995. The three steering committees and the focus groups mentioned above along with a fourth steering committee from a Commission on Mental Health was intended to provide advice to the DHFS for the preliminary proposal for Long Term Care Redesign. The DHFS released its preliminary proposal for LTC Redesign in May 1997. After public response, the DHFS announced that it needed to rework the Long Term Care proposal.
The LTC Redesign Consolidated Steering Committee was formed. This committee was to consist of LTC consumers and family members that were to represent members from each affected target group. The committee was to also include governmental, advocacy, and provider organizations.
The LTC Redesign Consolidated Steering Committee has 35 members 32 of whom represent agencies, organizations, companies and DHFS staff. The committee has created smaller work groups to work on the issues of the LTC proposal. A sampling of the work groups shows:
The Quality Work Group has approx. 95 members, 87 of whom represent agencies, organizations, companies and DHFS staff.
The Care Management, Consumer Choice, Rights and Participation Work Group has 47 members, 39 represent agencies, organizations or DHFS staff.
The Funding work group has 24 members, all representing agencies, organizations or DHFS staff; of these 24, 3 members represent advocacy groups.
Once again there does not seem to be an opportunity for significant input from consumers needing long term care to express their experiences with the system, what they feel is needed for change and to be certain their views are being recognized and included in the plan BEFORE any final plan is submitted or hearings are held.
There are a great number of people with disabilities whose needs are not being met by the present system. So even though the providers and advocacy organizations may represent the disabled, they represent those whose needs are being met. There are a great number of people whose needs are not being met and who are not being represented on the committees.
The revised proposal of Long Term Care Redesign is to be released in March of 1998. The DHFS will include the proposal in its budget request to the Governor for September 1998. Pilot programs were announced in September 1997 to begin in 1998. These programs were created in response to "suggestions that with major change to the LTC system the state should establish demonstration projects to be able to learn and make adjustments and to inform the broader redesign effort about the specific processes that will make a redesigned LTC system work well."
Consumer forums are scheduled for Mid-April to Mid-May.
-Why is there not more representation on the Consolidated Steering Committee and Work Groups by consumers?
-Why are consumers only being given approximately 30 days to meet and respond to the new proposed LTC Redesign?
-What are the dates and locations of public hearings or consumer forums for the new proposal of the LTC redesign?
-What is the state doing to make contact or notify those disabled individuals whose needs are not being met by existing programs or not associated with advocacy or provider organizations about the new proposal or the public hearings?
-Will the state notify people about the public hearings in a timely manner for individuals with disabilities to attend. People with disabilities have to arrange transportation making last minute warning of scheduled hearing dates and places difficult to attend.
- Consumers and their families are to be "actively involved at both the state and local level in planning and managing their care." However, are they being given the opportunity to be actively involved in the planning of the redesign of LTC?
- If input is anticipated from the pilot programs how will it impact the LTC redesign process when the pilot programs begin in 1998 and will still be in progress in 1999 after the DHFS makes its budget proposal to the Governor?
One of the reasons the disabled needs are not being met or neglected is because they do not have adequate representation. A network of communication is necessary to understand the needs of the disabled. Understanding their needs is required in order to redesign the Long Term Care System.
For more information about the Redesign of the Long Term Care system in the state of Wisconsin, see Wisconsin Department of Health and Family Services: Long Term Care
Please contact the Wisconsin Department of Health and Family Services with your comments about the proposed plan either on-line or write to:
DHFS Office of Strategic Finance
Long Term Care Redesign
P.O. Box 7850
Madison, WI 53707
Information for this editorial was obtained from the Wisconsin Department of Health and Family Services: Long Term Care: Redesigning the Long Term Care System, at http://www.dhfs.state.wi.us, 1997.
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