Karen Pellowski of Trempealeau fears that changes to long-term care programs for disabled and elderly people could obliterate the progress her son, Jason, has made in establishing a degree of independence in his life.
A new state law revamping Family Care and IRIS (Include, Respect, I Self-Direct) could threaten the effectiveness and consistency of such programs under a for-profit insurance system instead of the successful local and nonprofit agencies that foster independent living, Pellowski said Monday during a public hearing in La Crosse.
Statements from other parents, relatives, caregivers and agency representatives who testified at the Department of Health Services hearing echoed Pellowski’s concerns under the revamp that Gov. Scott Walker proposed and the Legislature enacted with some modifications.
The original proposal was to abolish all managed-care organizations in the state, such as La Crosse-based Western Wisconsin Cares and its 4,000 recipients, in the expansion of services from 52 counties to all 72 in the state.
Families and advocates were concerned that the plan would dilute services in the eight counties WWC covers, including La Crosse, Buffalo, Clark, Jackson, Monroe, Pepin, Trempealeau and Vernon.
It also jeopardized Family Care, which La Crosse County piloted in 1998 and has become a model for others, advocates had said. IRIS is credited with saving millions in Medicaid money, and an estimated 3,500 people in southwest Wisconsin, including 2,000 in La Crosse County, depend on Family Care.
The public hearing, one of eight being convened throughout the state, attracted nearly 100 people and was live streamed to get feedback on how to implement the new law, called Act 55. The DHS also has labeled it Family Care/IRIS 2.0.
Among other things, the changes would create long-term care regions larger than the current ones, as well as creating what the law calls integrated health agencies acting as insurers.
Although the law stipulates that the new procedures must retain options such as consumer-directed care and choices, the same eligibility and benefits, many caregivers and agencies have remained skittish because the original proposal seemed to jettison long-standing, successful and cost-efficient plans.
Among the main worries raised at the public hearing are that recipients of Family Care and IRIS might lose local providers who are familiar with their cases and have to surrender their decision-making powers to bureaucrats elsewhere.
Pellowski’s 44-year-old son was born with cerebral palsy and has several other afflictions that make it impossible to live on his own, she said. Although he attended school, she was his primary caregiver until he was 24.
Jason’s largely disabled right side requires him to use a walker or wheelchair. He has a high degree of cognitive ability and understands what is going on around him but has no verbal skills, she said.
“He has a lot of frustration and anxiety because he can’t express his feelings,” Pellowski said in an interview.
Jason’s lifelines to a sense of belonging and order in his life stem from his job at Riverfront Inc. and living in a Riverfront adult living home with three roommates, she said.
“He needs Riverfront” for the minimal job he works at its facility at 3000 South Ave. in La Crosse and the care he receives in its day services program there, Pellowski said.
“As much as I am involved, I can’t be there for him 24/7 — and he doesn’t want me to be,” she said. “He likes to see us come, and he likes to see us leave. His housemates and the staff are his family.
“People who are not familiar with developmentally disabled people do not understand that they need to have a purpose, they need to feel productive to have self-confidence,” she said.
Jason’s conditions are complicated ones that took physicians a long time to decode and devise treatments for, she said.
“It’s so important to me that Jason remain with the staff he has. It takes a long time for them to earn his trust,” Pellowski said. “Staff changes would cause radical problems for him.
“My fear is that private insurers wouldn’t know what Jason’s needs are and what is best for him,” while Gundersen Health System providers have been treating him for a long time and do know. “If we went someplace else, it would be catastrophic to his health and well-being.”
There is general agreement that MCOs in other areas of the Badger State have not fared as well or performed as efficiently as those in the La Crosse area.
For example, Ray Purnell testified that his stepdaughter, Dani Jo, had been on a 10-year waiting list when the family lived in Madison. When the family moved to La Crosse for his wife’s job, Dani Jo had services through the YMCA and Riverfront within three weeks, said Purnell, a disabled veteran who said he had not been able to gain such coverage for her through his VA benefits.
Other points people made during the hearing included:
- The success with which Family Care and IRIS help move people from institutional care such as nursing homes to independent or home-based situations must continue.
- The changes must be gradual to be less disruptive to a vulnerable population. (Act 55’s timeline calls for submitting a plan to the Legislature in April, go to the public in July and submit to the federal government in a year, with a target implementation date of January 2017.)
- Mental health care must be available readily and easily.