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Real Life Problems in the Current Long-Term Care System

In recent months, people from many counties have contacted the Governor or the Department of Health and Family Services about serious problems they or their family members were experiencing in the current long term care system because of fragmentation of programs and funding sources. What follows is a small sampling of those stories, and notes about how Family Care would have made a difference.

  • A gentleman documented the costs from the actual COP plan developed for his mother before she was placed on a long waiting list. In the community, she lived in her own home, which was paid for, and got help from some of her family and neighbors with grocery shopping and many household chores such as cleaning, changing the storm windows, snow removal and lawn care. In the COP waiver, the costs for additional care and support to be funded by COP-W were an average of $30 per day or around $900 per month. The cost in the nursing home she went to when she couldn’t wait any more was $3,000 per month. Her son could not understand the inequity of his mother being entitled to the nursing home but denied the chance to stay home—or the extra cost to the taxpayers that resulted.

    Family Care is a flexible benefit that puts community care on an equal footing with nursing home care. Each care plan will be built around the individual, and Family Care will deliver the right services at the right time in the right place.

  • A woman with an 18 year old disabled son went from agency to agency for help in planning for what to do when he graduated from high school. The school district no longer had responsibility, DVR wouldn’t take him, COP and Waiver funding had long waiting lists, Community Aids funded services were unavailable, and he was no longer eligible for the Family Support Program or the Katie Beckett Program. He was left to spend his days in his parents’ home.

    Eligibility for Family Care is based on level of disability. People who need services are assured of getting them without waiting. Currently separate programs are combined into one benefit, so people don’t fall through the cracks.

  • Two elderly sisters who lived in different counties in Wisconsin both became disabled. One was able to access needed COP services quickly when she needed them. The other was told there was a long waiting list in her county.

    Family Care will be equally available in every county where it is implemented.

  • A family member complained that her mother had gone into a CBRF believing that when she ran out of funds she would be eligible for COP. When the time came, she discovered that the CBRF that had become her home was too large for the COP or waiver money that would otherwise have been available and that CBRF care is not covered as a Medicaid card service. She had to move to a nursing home, which is covered by Medicaid, at greater cost to the public than would have been paid for the CBRF care.

    Family Care will cover the full range of long-term care services, including residential options like CBRFs and Assisted Living.

  • After an accident that left him paralyzed, a gentleman went back to school for more skills and a graduate degree. He found employment maintaining Internet sites and operating a toll-free phone service. His income is high enough to eliminate his former dependence on Social Security payments and he contributes about half his income to taxes and to the cost of his health care. Private insurance is not available from his employer and his Medicare coverage is about to expire because he now has earnings above $500 a month. When Medicare ends, his disability status under federal law is also lost, making him ineligible for Medicaid as well. Without needed coverage from any source for his extensive health care needs, he will have to discontinue working.

    Family Care will cover the long-term supports that people need at home and in the work place. Pathways to Independence will help people find and prepare for work. The Medicaid Purchase Plan will allow people to buy into Medicaid for health care coverage at a reasonable cost. Together, these innovations will make it possible for people to work and to contribute to society.

Last Revised:  July 12, 2010