Jenni Sanders has the life of a typical teenager. She joins her class at Coon Rapids High School each weekday. She goes on field trips with her classmates, learns how to use a computer, makes pottery and harbors dreams of becoming a lifeguard.
Jenni has a developmental disability and requires supervision throughout the day. A state program called the Consumer Support Grant enabled Jenni to have the support she needed to participate in the community and to be safe at home, enabling her mother, Kathy Sanders, to go to her job each day.
Now, state leaders have decided that the citizens of Minnesota no longer want to offer Jenni the opportunities of a typical teenager.
When the gavel came down on the 2003 legislative session in May, the part of the program that Jenni and 200 others depended on had been cut. The Senate version of the Department of Human Services (DHS) funding bill eliminated these 200 people, and the cut prevailed in the final bill that was signed by the governor.
That leaves Kathy to cobble together as much of Jenni’s support as possible, a task that will likely cost the state more than the grant and take Kathy weeks of jumping through hoops.
The Consumer Support Grant was implemented by DHS as an entitlement grant and would have followed Jenni into adulthood. Kathy saw it as a commitment from the people of Minnesota to provide a basic quality of life for everyone. The program defined Jenni’s need as ten hours of assistance each day, seven days per week. Kathy received $2,300 each month to hire a Personal Care Assistant (PCA) and cover other expenses relating to Jenni’s care.
“I was able to pay the PCA what they were worth,” Kathy says. The grant allowed the Sanders to pay PCA’s plus expenses. The grant would not pay school fees but would cover fees so that the PCA could be with Jenni during school activities. It helped Kathy keep her hours at work, purchase adaptive software for Jenni and, most importantly, made it possible for Jenni to be in community activities. The funds helped the Sanders maintain a typical suburban household with school, work and community activities. The program was efficient and effective.
“The grant allowed me to cover my expenses when I had to cut my hours at my job to care for Jenni, like going to doctor’s appointments and meetings,” explains Kathy. She has invested much time working with Jenni’s school, where administration and teachers are slowly realizing the Sanders expect Jenni to get an education, not just day-care, and she is determined to invest that same amount of time and energy into seeing that her daughter gets the same opportunities as her teenage peers.
Now Kathy’s determination has been put to the test. With the cut in the exception clause to the Consumer Support Grant, the Sanders are eligible for only $900 a month; considerably less than the $2,300 they had been receiving. At that level, Kathy could not afford to keep her job or pay a PCA what she considers a fair wage.
In order to get PCA services, Kathy has shifted from the grant program that provided for Jenni on a human-needs basis to the Medical Assistance program that considers Jenni’s disability to be a medical condition. She doesn’t consider all of Jenni’s needs to be medical, but politicians have chosen to limit the options.
“Now Jenni’s needs as an individual are not considered,” says Kathy. The Medical Assistance program lumps people into categories and divides the funds uniformly. The somewhat complex explanation is this: all the people who formerly were allocated ten hours of assistance a day are put in a pool. Each person’s assistance history is averaged, which means that someone who used only eight hours of assistance each day would bring down the average. Then each person is allocated the same average amount of assistance. For example, if the pool included 10,000 people, and 5,000 of those used their full ten hours while the other 5,000 used only six hours a day, the entire pool would be reduced to having the averaged eight hours a day in the next year.
“They said the grant was ended because the state could no longer afford it,” says Kathy. Yet the one-size-fits-all allocation will likely cost the state more and the Sanders will get less. Through Medical Assistance, funds are supplied directly to PCA agencies (mostly private companies) rather than directly to Kathy. Jenni’s PCA will now earn less per hour. Kathy will also have to cover all fees and expenses that enable the PCA to be with Jenni. If Jenni wants to go on a field trip, Kathy will have to pay the PCA’s fee as well as her daughter’s. That means Jenni will be able to participate in fewer programs.
And Kathy has to work harder to fit in the medical model. “The assessment process is awful,” she says. “These people don’t know Jenni from the next kid.” A public health nurse visits the Sanders’ home to determine how much time and assistance Jenni needs to dress, groom, bathe, toilet, eat, plan meals, manage finances, shop for essentials, do homemaking tasks, use the telephone and computer, get around in the community. From a brief assessment, Jenni is placed in a category and given the average assistance in that category. Kathy finds the impersonality of the process insulting.
“I think the state needs to trust us as parents,” says Kathy. “Few parents would really ask for more than what we need. Jenni is my daughter, and it is my job as her mother to know what she needs.” The former grant allowed Kathy to manage the assistance budget according to Jenni’s actual day-to-day needs. Now Medical Assistance speculates on Jenni’s needs using a medical model of assessment. Kathy is disappointed that the system likely costs as much or more and delivers less while it dehumanizes the Sanders. Instead of putting the dollars directly in Kathy’s hands and allowing her to make the best choices for Jenni, the people of Minnesota are now disbursing the funds to a smattering of public employees who will apply various processes that will route the dollars through mediaries such as the PCA agency.
It could have been worse. “I feared they would cut us off completely,” says Kathy. She listened for every threatening proposal that came up during the perilous legislative session that was driven by the mantra of “no new taxes,” which could only be translated to mean the state is spending too much on the quality of life for its citizens.
She has found it difficult to find anyone who will take responsibility for the changes. Kathy’s state senator, Leo Foley, (DFL) dist. 47, Anoka, vice chair of the committee that supported the removal of the exceptions, returned none of Kathy’s numerous calls during the session or after. Her representative, Stephanie Olsen, (R) dist. 47B, told Kathy she and her House colleagues funded the exception in its budget bill before it was cut in the Senate. Olsen called to check in with Kathy in the fall.
The biggest insult, though, came from the governor’s office. In her numerous calls, she was not surprised that she didn’t speak with Gov. Pawlenty, but in her last call in June, just after the session ended, Kathy says, “the governor’s staff was rude; they made me feel like I didn’t matter. When I said I may not even be able to work (because of the cuts), they told me I must not be paying much taxes anyway. They said, ‘You sound like an intelligent person, you can figure this out.’”
She has figured it out, and she will continue to figure it out, regardless of whether the changes in the system make sense, save money, or treat people humanely. Kathy’s working hard to minimize the damage to Jenni’s quality of life. And that means Jenni can still have a modified typical lifestyle and maintain dreams for her future.
“I will do whatever it takes to care for my daughter,” says Kathy. But that’s a mission no longer shared by Minnesota’s current leaders.