FAMILY MOVEMENT IN AMERICA AND

MASSACHUSETTS: Its History, Values

and Influence Lisa Lambert, Executive Director

Parent/Professional Advocacy League

January 27, 2012

Highlights

• Where we’ve been

• Family movement and family organizations

• Are we there yet?

Then…. •From 50s to the 90s, many children with serious psychiatric disorders were treated in institutions like this one. •Department of Mental Health (DMH) closed Gaebler Children’s Center in 1992, shifting treatment to the community. •Children went home, to foster care, group homes or residential care. •A new shift was taking place…

Then… • In 1982, Jane Knitzer’s Unclaimed Children found that 2/3 of

all children with significant mental health needs were not receiving needed services, were “unclaimed” by public agencies, many of which blamed or ignored parents.

▫ Wake up call and catalyst

▫ Jane Knitzer was one of the founders of the Federation of Families for Children’s Mental Health

• In 1984, National Institute of Mental Health began funding the Child and Adolescent Service System Program (later moved to Substance Abuse and Mental Health Services Administration (SAMHSA)

▫ Child and Adolescent Service System Program (CASSP) sites moved states toward a system of care, emphasized community based treatment, collaboration and increased involvement of parents and other family members

▫ In Massachusetts, a CASSP program has been guiding the Lynn community since the late 80s.

Then…

• A definition of system of care for children was first published in 1986 (Stroul & Friedman)

▫ Included involving families and youth as full partners

▫ System of care movement emerged, was funded, grew and expanded

▫ Massachusetts has had 4 SAMHSA funded Systems of Care grants (2 exist today)

Then…

• In 1999, the Surgeon General published a report on mental health in America.

▫ Stated all care must be consumer and family driven

▫ There was no definition of “family driven”

▫ In 2004, SAMHSA contracted with Federation of Families for Children’s Mental Health to develop a definition

▫ Incorporated as a key component of systems of care

Family movement

and family organizations • 1990s was decade of dramatic expansion of the family

movement • Families began forming groups to share information,

support and advocacy, the basis for family peer-to-peer support today

• Federation of Families for Children’s Mental Health, established in 1989, today links more than 120 chapters and state organizations who focus on issues of children and youth with emotional, behavioral and mental health needs and their families

• In 1991, Parent/Professional Advocacy League (PPAL) was formed and has just celebrated its 20th year

Our families

• Parents whose children have mental health needs:

▫ Highest divorce rate of any group of parents whose children have special needs

▫ More likely to lose their jobs or live in poverty (national survey of children with special health care needs)

▫ Highest rate of out of pocket expenses for needed services

▫ Most likely to experience stigma and blame

Family organizations and

“family driven” • Family driven means families

have a primary decision making role in the care of their own children as well as the policies and procedures governing care for all children

• Family voice is essential for effective systems of care and family organizations are an important strategy for boosting family participation, supporting and sustaining family voice (Lazear & Anderson, 2009)

• Family organizations advocate for experience-based values and the systems that reflect them

Increasing parent roles

in Massachusetts • Since the early 1990s, DMH has

funded family support specialists across the state

• From 1998-2009, Mental Health Services Program for Youth (MHSPY) served families in Cambridge and Somerville through a wraparound approach including family partners

• Collaborative Assessment Program, a joint program of DMH and Department of Children and Families (DCF), included parent partners as a key element

• Coordinated Family Focused Care (CFFC) provided coordination and care planning teams, including a family partner

Increasing impact of

families • New roles for families (and

professionals too) • Family involvement at all levels

▫ In choosing care for their own children ▫ In developing policy for all children and families ▫ In roles providing direct service ▫ In impacting funding and legislation ▫ In reducing stigma

• Family programs ▫ Support ▫ Education ▫ Advocacy (schools, emergency rooms, policy)

Family movement and

impact in Massachusetts • Parents and family members have gained

progressively more central roles in their children’s mental health care

• Massachusetts has developed family partner roles to deliver peer-to-peer support throughout the state

• Families are participating in systems of care committees and sit at other policy tables where they can change conversations and push for improvements

• Families bring persistence, passion and irreplaceable personal experience to evaluation and quality improvement discussions

Family movement and

impact in Massachusetts • Families testify on bills that will

affect them (Child in Need of Services (CHINS) reform, school dropout age)

• Families weigh in on funding and budget cuts • Families speak out in the media (WBUR, Boston

Globe) • Families participate in Children’s Mental Health

Campaign • Family organizations provide information, key

talking points, skill building

Are we there yet?

• First ask: What do families value? ▫ Involvement as full partners ▫ To receive services in their own

communities ▫ For services to be effective and systems

accountable ▫ Transition age youth to receive services that

engage them and work for them ▫ To reduce stigma and blame for “poor parenting”

• Then ask: How are we doing?

Are we there yet?

We’re Getting There!