Mary's Story: A Crisis of Care and a Call for Advocacy

Article excerpt

Your office phone rings as you are preparing a will for your client Mary, a nurse who practiced for more than 30 years before retiring. She wants her will and power of attorney documents put in order, as she is in her 70s and has already recovered from one stroke.

You answer the phone. It is Mary's homecare worker, explaining that "something is happening" to Mary. She also explains that she found your business card in her papers and is calling for guidance. She describes Mary as being stiff and having difficulty speaking, and that she is frightened for both of them.

This is a true story, and one of the reasons I became an elder and disability rights advocate- to ensure that older Americans are able to live lives of dignity and respect with the best possible care. There is something wrong with our current system and this experience brought it home for me.

My client had spent her life caring for others, but at this crucial moment didn't have the support of a trained professional who could recognize the signs of stroke and call 911 instead of an attorney. At that moment I realized how vulnerable we are and how we take for granted our ability to do simple things like get in and out of bed on our own, and communicate how we feel.

I asked the worker to hang up and call 911, and drove to my client's home. Five people struggled to get her into the ambulance, while her body was rigid and stiffening. I stayed with her and advocated to help her get the medical care she required, as well as the therapy and direct-care support she needed to recover and return home to her family successfully. Working with Mary's daughter, social workers, therapist, nurses and others, we developed a comprehensive care plan that brought Mary home and provided care and supports.

Birth of an Advocacy Group

Mary's story stayed with me, and led me, in 2007, to establish the Direct Care Alliance (DCA), a national advocacy organization for the more than 3 million directcare workers in the United States. The truth is that as a nation we have not solved problems like Mary's, or similar social injustices that occur every day. I can't imagine a more tragic outcome than spending your life in the service of others as a nurse, yet when you need help and support, you find yourself alone and having a stroke- with no trained professional to take care of you.

Improving the training, education and capacity to advocate for themselves on behalf of direct-care workers has been my mission since that day. As a statebased alliance of direct-care workers, employers and people who use long-term services, care and supports, we are united to build an empowered and valued professional direct-care workforce. It is essential to ensuring high-quality services and a life of dignity, respect, autonomy and opportunity for all to participate in community life. …