My Dear Old Friend, Matilda: A Short Caregiver Story From The Heart

Wow, I have so many wonderful memories of people I’ve worked with over the last twenty-plus years as a caregiver. One of my favorites was an elderly woman I’ll call Matilda. She was in her 90s when I did her bath visits, so I’m sure she is by now departed. I went to her apartment by the U of MN campus in the Riverside neighborhood twice a week to give her a bath, do laundry, and help with whatever she needed. She loved watching “Price is Right” on her antiquated television from her worn-out arm chair, and eating potato chips. She would tell me stories about her son, who was a professional at the university, and how she raised him while working in a factory. Her arthritic hands were evidence of her years of hard labor; there was something very beautiful about them, knowing what they had accomplished. During bath time, we started a tradition of our own: singing together. As I shampooed her incredibly long, gray hair (twice to get it really clean), we found songs we both knew the words to. When we got loud, she would sometimes stop, look at me with a bright smile, as if she were channeling her inner child, and giggle, “My neighbors probably think I’m having a party over here.” We both laughed heartily about that prospect. Bath time was always followed by braiding that long, gray hair, so she was fresh and neat for a few days until my return – when the fun would begin again. Imagine if I had just gone in to do my job in a routine way. I wouldn’t have anything to delight in today, looking back…I love you, “Matilda” wherever you are.

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Invisibility Cloaks: Social Contracts We Make with Caregivers

Hush!

Let’s not move for a minute.

It will take only a minute.

There you go.

You can’t feel it, but now you’re wearing an invisibility cloak.

You are now completely invisible.

Even your humanity is totally hidden, which is what we want.

And you won’t remember that you signed a contract with other human beings.

You are subservient to them, but will be called “family.”

That’s an emotional trap to keep you here. But it’s a one-way relationship.

Now let me tell you about this invisibility cloak.

Here is how it works.

When you’re hungry, we won’t know it.

That would just make us feel guilty and that’s no fun.

When you start to cry, we won’t see.

Not even when you weep.

Your breath may be faint, soft, like you’re not even there.

Almost inanimate like a statue you are.

To sleep, to dream at night, we will be unaware.

It’s like you don’t exist to us.

When your heart breaks because you can’t be with your children, we won’t have to be uncomfortable.

Because we can’t see you!

Life is good for us when you’re invisible!

Your humanity is not in our faces to reflect what we are doing to you.

We will never know how we killed you in the end.

You will silently slip away from within your invisibility.

Like a vapor into the wind.

Help Us Change the World: Apply to the DCA’s Voices Institute

This is a repost of a blog I submitted to the direct care alliance in 2009.

Bridget (third from R) and colleagues at the 2008 Voices Institute training

Download the invitation letter and an application form you can mail or fax(PDF)

Apply online

“I would recommmend this training to anyone who wants to become a leader,” saysTracy Dudzinski, one of the empowered graduates of the 2008 Voices Institute National Leadership Institute.

The Voices Institute is now recruiting direct care workers to become the next class of leaders in a grassroots movement to strengthen and celebrate the workforce that provides vital services to Americans who need chronic care.

I know very well how important we are: I have been a direct care worker for well over a decade. For most of that time, I lacked a sense of having a connection with other direct care workers and felt powerless over my professional situation.

Then I attended the 2008 Voices Institute and found a network of new friends and colleagues. Being united with others who have a background similar to mine, and feeling a kinship and a bond with people who mirrored me, was one of the most inspirational times in my life.

For an entire week we were immersed in the Voices Institute curriculum, gathered together as a collective voice, overflowing with vision and capacity. Upon graduating from the Voices Institute, we were empowered like never before: stronger, smarter, and better-equipped with tools and knowledge to be effective direct care worker leaders.

Nothing else exists which can compare with the Voices Institute. With each new class of graduates from the Voices Institute every year, we will grow in power from the grassroots level.

If we do nothing to elevate the workforce, we will remain fragmented and overwhelmed. Those who graduated from theinaugural class are a lot of firecrackers who are now unstoppable. We are part of the foundation of the grassroots movement that will make transformative changes for direct care workers. True empowerment and professionalization of the direct care workforce require strong direct care worker leadership.

Now is your chance to step up! Whether you are already a leader, an aspiring leader, or just want to learn how you can lead, this is the program for you. I was once timid about taking leadership, but the Voices Institute changed my life and showed me what I can do. I am now coordinating the Voices Institute and nurturing others on their leadership journeys. Here is your chance to tap into your own potential!

The Voices Institute’s National Leadership Institute is now accepting applications for this year’s leadership development retreat, which will take place from September 27th to October 3rd at the DeKoven Center in Racine, Wisconsin. The application deadline is April 30th, so please submit your nominations and applications as soon as you can. We look forward to welcoming you to the leadership ranks!

Visit the Voices Institute page of our website for more information.

Bridget Siljander
Direct Care  Worker Specialist
Direct Care Alliance

 

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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