Comments from caregivers of people living with mental health conditions have been occupying my thoughts. Recently, I worked on two reports based on nationwide surveys of caregivers—On Pins and Needles: Caregivers of Adults with Mental Illness (with partners from the National Alliance on Caregiving and NAMI), and soon-to-be published on the Temple Collaborative website, Community Inclusion from the Perspectives of Caregivers of People with Psychiatric Disabilities.
In both of these reports, most of the caregiver respondents self-identified as close relatives—the vast majority as parents. They made it abundantly clear that they, as well as their loved-ones, face many challenges—including stigma.
Almost twenty years ago I was the primary caregiver of a rapid-cycling, suicidal teen, who I referred to as the “teenaged Morticia.” During those seemingly unending four years between my daughter’s 14th and 18th birthdays, life was chaotic and frightening for my entire family. Even though we experienced many of the same issues that caregivers report today, at the time I didn’t think of it as stigma. But I guess it was.
I regarded the inequities that my family experienced as out-and-out discrimination. I was outraged that in that pre-parity era getting insurance reimbursement was a constant struggle. Claims were always being lost and denied—or lost, then denied. In fact, insurance coverage for my daughter’s treatment might have ended altogether—because she reached the lifetime limit by the time she was sixteen! To my relief along came the first iteration of the federal parity bill, and even though overt discrimination was still legal (albeit somewhat lessened), at least half of the cost for a limited number visits were covered—rather than nothing at all.
Were it not for having really good credit, my family would have drawn even closer to bankruptcy as we supported, financially and otherwise, my daughter’s recovery. Somehow we cobbled together treatment that made a difference, and won the battle to have the school district pay for an individualized education at a private school where, unlike the experience reported by so many caregivers in the surveys, the staff did understand and made a positive difference.
My daughter is no longer Morticia. She has grown up and left home. She has become an accomplished woman—a hospice nurse (maybe there’s some irony in that) who is happily married and expecting her first child.
The financial burden impedes caregivers’ ability to afford to include their loved ones in all of their own social activities. In these surveys caregivers were emphatic that stigma must be addressed by educating school personnel, employers (and employees), clergy and other community leaders, and the public. They begged for compassion for themselves and their loved ones.
Caregivers said that because of stigma, their social life was compromised and invitations dwindled. One mother, speaking about her daughter reported: She’s fine . . . (but) I have no socialization!
Caregivers reported that their employment suffered too, as they try to make up for the deficiencies in mental health services and supports. Still they wanted to do more, as did this mother: The only way I could support her more is to quit my job and be with her 24/7.
When I think back to those difficult years when my daughter struggled, what sticks out most in my mind is the way that people looked at me. Unlike many of the survey respondents that reported people turned away, or pitied, or even blamed them, I remember people did look at me—with tears in their eyes. Maybe their tears represented the compassion that caregivers expressly called for, but it felt like the tears were just the outward expression of the cliché: there but for the grace of G-d….
Debbie F. Plotnick, MSS, MLSP is the Vice President for Mental Health and Systems Advocacy at Mental Health America (MHA). Previously, she was the Director of Advocacy and Policy for the Mental Health Association of Southeastern Pennsylvania (MHASP), where she developed policy, organized grassroots advocacy activities, and designed recovery-oriented, community services. In her role at Mental Health America, Debbie provides leadership for mental health and systems advocacy initiatives within its affiliate network, with outside coalitions, industry/business, and policy makers. She provides technical assistance to policy makers, government officials and is frequently called up to speak to the press and the general public about what is needed to create a community-based continuum of mental health care, and to challenge entrenched mindsets and misinformation. She also coordinates the efforts of the Regional Policy Council (RPC), a six person council of MHA affiliate policy experts.
Debbie earned a degree in Political Science from Bryn Mawr College. And she holds dual master’s degrees in Social Service (MSS) and Law and Social Policy (MLSP) from the Bryn Mawr Graduate School of Social Work and Social Research. But her real understanding of mental health recovery and her passion comes from the people she works with and for, and her true expertise comes from her own lived experience, as a family member, and a mental health systems advocate.