Mental Health Association in New York State, Inc.
(Publication Archives)

Community Connections, Fall 2002

Mapping PWPD Throughout the State
By Renée G. Benson, CSW, Managing Director, MHANYS

The map in front of me looks a little bit like it had too much exposure to a kindergarten class. The map is portioned off by counties and each of the counties are grouped into six sections, each highlighted a different color. The entire map is now a patchwork of colors, every county is included. Enough about our coloring abilities, the important point is not our artistry but what it represents. Each of the highlighted sections represents a task force region that is working together for the purpose of identifying gaps in service, and developing strategies to meet parents' needs. These are parents that share the same needs as all parents, and these are parents living with mental health challenges. In a meeting held October 2, 2001 this statewide initiative began. A second statewide meeting is scheduled for October 2nd this year.

Why did this initiative need to happen? Over a number of years of working with this topic we found that there are systematic complexities that need tackling, there are cultural biases that demand attention, and chasms so wide and so deep that families are stumbling into them and are never resurfacing. That's pretty dramatic language, yet it describes the situation facing the families I have met. Here are some figures for you: Nearly half of the women and men in the United States report a lifetime prevalence of psychiatric disorder. (Data from a National Comorbitity Study (NCS) a survey of over 8000 respondents carried out between 1990 and 1992 by Dr. Ronald Kessler (Kessler, 1994)). Thirty percent report the prevalence of at least one disorder in the previous 12 months (Kessler, et al., 1997). Two-thirds of these women, and over half of these men are parents (Nicholson, Larkin, Simon, & Banks, 2001). Custody loss rates for parents with mental illness range as high as 70% to 80% (Burton, 1990).

While the concept of providing funding for adults through adult services, and funding for children through children's services sounds comprehensive, a systemic flaw is generated when adults who are parents get services exclusively from the adult funding streams without concern for their families. Adult services are often unable to connect parent advocacy, child respite services, parent support groups, parent education and other support services. Often, services are not logistically available or existent. Children who have not been given a diagnosis themselves are not provided for by many of our systems. For example, in many counties of New York State a person that can parent well most of the time, but needs a respite from parenting occasionally, cannot access children's respite services to keep him or her from overload unless the child has a recognized social, emotional or behavioral disability.

Cultural bias has been feeding off of the assumption that adults with a psychiatric disability just don't have children, or if they do, they don't constitute numbers great enough for services to be developed. Research suggests that women with psychiatric disabilities are just as fertile as other women and are just as likely to become pregnant. But, until our culture recognizes that this is a substantial population, it won't create the needed programs. Additionally, parents in this situation are not necessarily willing to jump into the limelight and discuss their situation because, like all parents, they are concerned about the many ramifications that this could create for their children and for themselves. Parents suffer both from stigma and from the fear of losing their children to out-of-home placements if others judge him or her incapable of successfully parenting.

In this edition of Community Connections you will find a listing of six regional task forces. Please check on the web at www.mhanys.org and view the PowerPoint presentation on the front page of the website. Then go to programs and click on PWPD to read about the statewide meeting and the programs in NYS run by five MHAs to address these issues, and most importantly, check out the task force regions. Read about what they are doing and join the task force in your region. As I said at the statewide meeting, "Only with long lasting and productive alliances will we be able to successfully raise awareness of parenting issues among providers of services, improve the range and quality of services, and begin to address the many challenges that we see ahead. These challenges are in every arena: housing, mental health services, support services, emergency services, parenting, educational services, justice systems and employment. Discrimination and stigma are pervasive....Together we can join our voices to make a larger impact and make statewide improvements."

posted 9/17/02