New Horizons Un-Limited Inc. New Horizons Un-Limited Inc.A Consumer Forum concerning the Wisconsin Long Term Care Redesign Proposal was sponsored by Independence First and held at the Washington Park Senior Center, Milwaukee, Wisconsin on 5/20/98.
The Consumer Forum was titled: Redesigning Wisconsin’s Long Term Care System --Revised Preliminary Proposal of the Department of Health and Family Services for the “Family Care” Program. (DRAFT 4/7/98 for review by DHFS Consolidated Steering Committee).
The Milwaukee -Journal Sentinel in its May 21, 1998 newspaper article: "Parents worry about effect of long-term care reform" reported:
For more information see the Milwaukee Journal-Sentinel article.
New Horizons Un-Limited Inc. includes the following letter, a commentary by a consumer (caregiver) whose ideas were voiced at the Milwaukee, Wisconsin Consumer Forum.
I am a caregiver of a physically disabled younger family member.
I have read most of the Revised Preliminary Proposal and have 6 recommendations and a few comments.
My first comment has to do with the fact that the consumer has been greatly under-represented on the redesign committees.
The great majority of committee members represent either agencies or the Department of Health and Family Services.
Granted, there are caring and well-intentioned people on these committees, but if most of their background or experience is limited to 8 hours a day, 5 days a week with the remainder of their time spent in the broader world, how can they possibly know the needs of those with multiple disabilities and their caregivers whose experience comes from the reality of a 24 hour day-year after year, after year?
As a caregiver who has tried to deal with repeated frustration in accessing the Community Options Program on behalf of a younger physically disabled adult, I would like to make recommendations for needed changes in the system and also to suggest what might be done to forestall the need for LTC.
1. A CONSUMER HANDBOOK IS ESSENTIAL. Please develop one.
Page 11 of the Revised Preliminary DHFS Proposal says in order for people to make informed choices, they need access to information. Nowhere does it say this information shall be in writing.
Having dealt with the old system of attempting to get information, the endless phone calls, the endless waiting for responses and trying to get past the stone wall, I feel it is essential that there be a consumer handbook for the Community Options and the Medicaid Waivers program. A handbook similar to the Medicare handbook that should state in clear language the issues of eligibility, available services, options, assessments, response time, choice of providers, complaint and appeal processes, etc. This handbook should be available to consumers prior to applying for the programs.
Putting it all in print can save frustration on the part of the consumers and save labor costs as well.
2. ADD A PHRASE TO THE PROPOSAL that states a CMO must demonstrate “the ability to respond timely and responsively to all complaints, grievances and appeals.” I would suggest to INCLUDE THE PHRASE “ALL INQUIRIES” and not limit this to complaints, queries and appeals.
3. OPEN UP THE MARVELOUS SENIOR RECREATION CENTERS AND NUTRITION PROGRAMS TO THE YOUNGER PHYSICALLY DISABLED INDIVIDUALS.
Pages 12 and 30 refer to “Maximum desired community participation and social growth...to the extent to which potential community resources would facilitate.”
Anyone who has attempted to find recreation programs for multiply-disabled individuals will attest to the fact that there are very few recreation programs or social opportunities available, so pages 12 and 30 do not hold much promise.
However, allowing younger physically disabled individuals to utilize the senior recreation centers and nutrition programs could be a start on resolving this lack of recreation and social opportunities.
More importantly, access to the many diverse activities and trips could alleviate the boredom and loneliness inherent in being isolated.
4. ENFORCE THE RULES ON EMERGENCY CARE. There is no point in making rules if some counties are going to interpret them to their own advantage.
One can only wonder how many younger disabled individuals have been advised by Community Options Program people to go into a long term nursing home until COP funds become available.
5. My fifth recommendation has to do with consumer councils suggested in the proposal. Recently at a hearing on nursing homes, a gentleman suggested HAVING A CONSUMER-ONLY BOARD, stating that ONLY THEN WOULD THE CONSUMER HAVE A FAIR CHANCE TO BE HEARD. It sounded like a great idea, as opposed to a consumer-dominated LTC Council with 51% representation and particularly needed given the poor representation consumers are having in the planning process of the LTC proposal.
A SEPARATE CONSUMER BOARD might also address an issue referred to in one of the focus group reports, dated July 15, 1996, which said:
6. ABSORB THE ADULT SERVICES PROGRAM FOR THE PHYSICALLY HANDICAPPED INTO THE DEPARTMENT OF AGING. The Milwaukee Journal-Sentinel reported that some of the counties in their pilot programs have one Area Resource Center providing services for both the disabled and the elderly.
IF DHFS IS LOOKING FOR CONSISTENCY ACROSS COUNTIES, HAVING ONE AREA RESOURCE CENTER INSTEAD OF TWO WOULD BE CONSISTENT WITH THAT PURPOSE.
Actually, the problems facing the younger physically disabled and the elderly are very similar - isolation and loneliness - the major difference being that the elderly face these problems only in the retirement years, whereas the physically disabled frequently face these problems continually once they are out of school.
Combining these programs could eliminate duplication of services and facilities.
Here in Milwaukee County, the Department of Aging runs a very good program. It keeps their clients informed through newsletters and hearings, and shows a sensitivity to the needs for those they serve and just generally have an excellent outreach program. It is far superior to what is available to younger disabled adults.
The physically disabled could benefit significantly from participating in the programs of the Department of Aging.
Granted, it might require changes in the Older American Act. However, since much of what is being proposed in the Long Term Care Redesign is contingent on changes at different levels of government, it is no big deal. If some counties can have one combined resource center instead of two, why not all counties.
One resource center could also prevent fragmented services in families in which there are younger disabled as well as elderly individuals. This is no small matter. Parents in their 60s, 70s, and 80s are still providing care in their homes for their adult disabled children.
One resource center could also prevent DISCRIMINATION in the budgeting of COP funds and Base Community Aids.
Finally, I would like to SUGGEST A WAY OF POSTPONING THE NEED FOR LONG TERM CARE.
For parents providing care in their homes for their adult disabled children, establish a two-part respite program.
One program could provide, at the very least, a two-week respite once per year, to enable families to take vacations or to take care of major medical problems.
A second program could provide respite one day per week to enable parents to take care of errands and basic necessities, such as medical and dental appointments, haircuts, car and home maintenance, as well as the needs of other children in the family.
Providing respite would be a cost-effective approach and a realistic one as well.
It would also be a fair one considering these parents are saving the government millions of dollars annually.
I would guess if any studies were done as to reasons a family member had to enter a nursing home, a very strong factor would be the inability to take care of the family’s basic needs, much less the recreational needs of the rest of the family.
THINK ABOUT IT!
Think about it every time you leave your home to run an errand whether to the grocery store, to go to the library, or to spontaneously spend some time with a friend.
Think about the luxury of your freedom to come and go as you please and ask yourself if you would be willing to give up that freedom.
These thoughts are JUST THE BEGINNING OF THE NEEDS TO BE ADDRESSED. In addition, there is finding housing, finding reliable care workers and funding, all at the same time.
For many it is a matter of trying to get a disabled family member established before a parent dies.
PLEASE, PLEASE DO NOT LET THIS BE A HEARING SIMPLY TO SATISFY LEGISLATIVE REQUIREMENTS.
PLEASE REMEMBER THESE ARE HUMAN BEINGS WHOSE LIVES ARE BEING GREATLY AFFECTED AND YES, EVEN CONTROLLED, BY WHAT YOU PROPOSE.
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