Jeff

After living at my parents’ for about a year, and working at the Fingerhut factory and other factories in Saint Cloud, and then ‘upgrading’ to an office job as a staffer at Becklund Home Health Care, I met Jeff. It was a serendipitous meeting, like many significant connections often are. A personal care assistant (PCA) named Dave came into my office one day, saying that he worked with a man named Jeff who needed some hours filled. He said that he was ‘private pay,’ which meant a higher wage. When I found out that it was $15 per hour, I could not pass it up. Sometimes the timing is right because I was burning out on being in the office and I longed to work directly with people again, which was my passion. It did not take much convincing to arrange a meeting with Jeff – a weekend shift at the end of June, 2000. I was 21 years old and Imani was 2 years old.
My parents had company from Arizona the day I started with Jeff, and the house was buzzing with energy. With my hair slicked back with gel, my nose and many ear piercings, and jean shorts and a T-shirt, I made my exit and got into my mud-brown Lincoln Continental Mark 5, which was like a tank, or a boat without sails on the freeway. This was a new chance for me and I felt deeply honored to be asked to serve Jeff.
When I parked in Jeff’s guest spot at his townhome neighborhood, and put the car in park, the shifter fell into my lap. Luckily it was already in park. Not wanting to delay my new assignment and being dedicated to utmost professionalism, I ignored my broken car and walked confidently to Jeff’s front door, ready to work. As I made my way across Jeff’s front yard, his mother, who went by ‘Mimi,’ said, “Oh, Jeff, is she ever cute!” She would remind me of that for years to come. When I rang the doorbell, Mimi opened it immediately, dressed in a red, flowing dress. “You must be Bridget,” she smiled warmly, ushering me toward Jeff, who was lying in his hospital bed in the living room. “Hi, Jeff,” I said, “What would you like me to do first?” I asked him. Both Mimi and Jeff were so charming, and their home looked rich. It was enchanting and relaxing to be there, especially with all the chaos in my life. I told them that their back yard on the neighborhood pond looked like the French Riviera, and they were tickled.
And because of Jeff and his promise of a stable job, I once again moved into my own apartment with my daughter and re-enrolled in college.

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Returning to Work After Baby with Multiple Worlds on My Shoulders

There was a pause after a stream of kids got off the school bus in south Minneapolis, and then I saw Cole, who was 11 years old, moving intentionally down the bus steps, smiling and staring blankly, with his shock of blonde hair blowing in the crisp fall breeze. His empty-looking backpack was partway open, but there was nothing at risk of falling out. Without making eye contact, he made a bee-line for the front door, which was open, and barged into the kitchen. On the counter, he found string cheese and peanut butter crackers that I had made for him moments before. As if he hadn’t eaten all day, he scarfed them down and then asked, “Milk?” “Oh, sorry, Cole, I will get you a glass of milk.” “Milk!” he said, raising his voice. “One minute, Cole,” I reassured him, opening the refrigerator door and pulling out the carton of milk – then grabbed a glass from the clean dishwasher, even though it wasn’t dry. Before I finished pouring the glass of milk, he plunked himself in front of the television on his favorite chair, and found “The Simpsons.” Stomping his feet, he laughed and pointed, “Homer is silly!” We shared a chuckle. Then I asked, “Do you want your milk now?” “Yes!” he replied, taking the glass and drinking it down.

When the episode was done, I asked him if he wanted to do some stretching exercises and he agreed, picking up a toy truck he liked to play with. First we took off his leg braces, and he sat on the floor. Starting with his calf muscles, I held his left knee and pushed his foot toward him, then did his right side. In ten minutes, I stretched his calves, hamstrings, quadriceps, and hip flexors, to keep him limber because cerebral palsy causes muscle spasticity.

Cole was also autistic and intellectually disabled. He needed constant supervision and support because he was vulnerable and unsafe if left alone. Sometimes he got very anxious and overwhelmed, so he would hit and throw things. Once already, he had hit me in my pregnant belly when he wasn’t able to regulate his emotions. He didn’t want to feel like that, he couldn’t help it. I understood because I had anxiety and depression. We went to his local community center to play sports with other kids his age. They included him and treated him like a regular person. We enjoyed doing things together after school, and we had our routine.

After stretching, Cole liked to relax with video games. That was when I normally went to the bathroom to pump my breast milk for Imani, and put it into small plastic, labeled cups. It took me about ten minutes if I turned the machine on high, with both sides attached to suction cups that attached to milk bottles. Cole’s sister, Ricky, sat with him while I was gone, but I still hurried.

My breasts were tender as I turned off the suction and pulled the cups off. Every two hours, around the clock, pumping had to be done to produce enough milk and not dry up. This included getting up every two hours in the night to pump, so of course, I never slept. It took time to set up and finish, besides the actual pumping, and then it took a while to fall back to sleep – as exhausted as I was. Breast milk is recommended for babies, especially premature babies who are underweight and trying to catch up from the time they are born. Every day, I slept for about an hour at a time, worked all day, and was still recovering from child birth without a maternity leave. It was mere days until I returned to work, still stapled from a cesarean section, and trying not to tear the incision open as I did personal care assistant work for several people: Cole, Mark (a quadriplegic), Matilda (an elderly woman), and an elderly pair of sisters, Marie and Martha. This was where the benefit of youth made a difference, because for three months until my daughter came home, I slept a few hours a night – and then I continued to sleep a few hours a night. Looking back, I don’t know how I was able to function doing all that on my own as a 19-year old single mom with virtually no support system.  I worked incredibly hard.

“Ricky, you can go in a minute, I’m just about done,” I yelled down the stairs, peeking out of the dirty bathroom that looked like it hadn’t been cleaned in months. Ricky didn’t say anything. She was quiet and seemed depressed, rarely smiling. It was hard to know what she was thinking, and she didn’t share. On my way back down the stairs, I was met by Cole’s mother, Beate, who practically cornered me. “Marriage is hard enough without a disabled child,” she hissed. Stunned, I had no time to react, just looked at her with big eyes that conveyed no understanding of what she meant. My heart started to race as I slowly distanced myself from her, returning to Cole, who was shrieking in the living room.

DCW Helps Fight Proposed Cuts to Critical Disability and Aging Services in Minnesota

This is a repost of an article I submitted to the Direct Care Alliance, May, 2009.

Bridget Siljander

“Bridget Siljander calls them the ‘invisible workforce.’ Without them, though, the fallout will be starkly clear,” begins a story that ran last week in the Minneapolis-St. Paul Star Tribune,  one of the biggest papers in my state.

The advocacy work that led to my being quoted was fueled by my participation in the Voices InstituteNational Leadership Program, so it seemed appropriate that I was en route to New York City to meet with the rest of the program’s training team when I received a call from the Star Tribune’s Gail Rosenblum. She was writing a story about the personal care attendance program, and when she told two of Minnesota’s strongest advocates for people with disabilities – Anne Henry of the Minnesota Disability Law Center and Anni Simons of The Arc of Minnesota — that she wanted to talk to a personal care attendant, they sent her to me.

I was more than happy to share the positive side of personal care work, a profession that has been denigrated in recent months in my state of Minnesota. I told Gail that the contribution of personal care attendants to society is tremendous, and she clearly understood what I and the others she had talked to were saying. Her article provided a balance to very negative press for personal care attendants that has run rampant this year.

The storm that has personal care attendants in its eye in my state started this January, when the Minnesota Office of the Legislative Auditor (OLA) released a report on an evaluation of Personal Care Assistance Services. What emerged from that study was not good news for the program and has shaped decision-making in the Minnesota legislature ever since.

According to the OLA report, “Personal care services remain unacceptably vulnerable to fraud and abuse.” The report also notes that total annual spending for Minnesota’s PCA services exceeds $400 million, with the implication that much of this spending is wasted on fraud. The public reaction to this information has been full of rage, even cruelty. This has prompted the governor and legislators to try to slash funding to the PCA program, in a misguided attempt to reform what is actually a low-cost program that is responsive to consumer needs.

The people who need personal care services depend on them to live independently in communities of their choice, manage their health, reduce safety risks, and avoid higher-cost services and settings. The program is designed to fit a great variety of needs while providing a higher quality of life than would be had elsewhere.

Nobody is more offended by the fraud that diverts some of the much-needed funding for PCA services than personal care attendants, the people who use their services, and their advocates and family members. That’s why we were all so glad to read Gail Rosenblum’s article, which was infused a much-needed dose of respect and acknowledgement of the importance of PCA services into the discussions around personal care assistance.

I have spent a great deal of time at the Minnesota Legislature during this session in efforts to promote the value of personal care assistance services. I have met an impressive group of people there — passionate advocates who come from a multitude of backgrounds but share a common purpose.

Several of these powerhouses are my fellow board members of the Direct Support Professional Association of Minnesota. Lance Hegland is a consumer of personal care assistance services because he experiences a form of muscular dystrophy. He is also the founder of PRECISA, Inc., which provides organizational consulting, and a regular contributor to Minnesota’s disability newspaper, Access Press. Lance manages his team of workers with respect and appreciation and advocates for workers with the same high regard. A tireless and impressive advocate, he led the first direct care worker celebration in 2008 in commemoration of National Direct Support Professional Recognition Week, which was designated by a Senate Resolution. He is active in many public policy activites on behalf of workers and is one of the most dynamic members of the Direct Support Professional Association of Minnesota.

Brigette Menger-Anderson, a former career direct care worker, is a manager for a consumer-directed PCA program with the Metropolitan Center for Independent Living and deeply committed to the development and advancement of the workforce. Her program employs 450 personal care attendants and provides supports to 135 consumers. She works closely with senators and legislators to improve the quality of the Personal Care Assistance program for both consumers and workers. Brigette gave an interview last year to Minnesota Public Radio on gas prices and their effects on seniors and people with disabilities, which was later broadcast by National Public Radio. The story was thenpicked up by the New York Times and covered by Access Press. Brigette is admired for her advocacy work in Minnesota and treasured by many for her optimism and wit.

A large part of our responsibility as advocates is to educate others – particularly decision-makers – about the importance of direct care work. There is much more to do in that regard, but we will fight this battle until the work I am proud to do is made attractive enough as a career option to attract and keep the robust, plentiful workforce we need. We want to be surrounded by PCAs who are fairly compensated, respected, and providing high-quality services and care.

Until that day comes, my fellow advocates and I, who know exactly why we get up and go to work on this issue every day, will stay focused on our common vision. And in the meantime, we are pleased and grateful for milestones like theStar Tribune article, which let us know that there are many people out there who see this “invisible” workforce and hear what we’re saying about it.

Bridget Siljander
Direct Care Worker Specialist
Direct Care Alliance

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