Respite Care: What Families Say
In Massachusetts and across the country, children with mental health needs now receive most of their care in their homes and communities. Much has been written about the value of this shift away from out-of-home care. Less attention has been given to how this shift has led to increased burdens on families. PPAL survey 280 families to better understand their need for respite care services, the value they place on these services, and the challenges they face in accessing these services. In, Respite Care: What Families Say families overwhelmingly report that there is a need for appropriate and affordable respite care. Most families have not been able to access respite services.
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Pointing the Way to Leadership
YouthMOVE Massachusetts has published its first report, Pointing the Way to Leadership. This youth-led group held structured focus groups to find out how youth defined leadership. In this report, they reflect how their experiences have honed certain traits and how much support has meant to them. Youth, they tell us, welcome opportunities to grow into the leaders of tomorrow.
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Linking Medical Home and Children’s Mental Health: Listening to Massachusetts Families
While families whose children have mental health needs face many barriers to care, the medical home model holds great promise for addressing some of those needs. PPAL surveyed 171 families to better understand their experiences. In, Linking Medical Home and Children’s Mental Health: Listening to Massachusetts Families parents overwhelmingly reported that they had the primary responsibility both for communication and coordination of their child’s care. Most had to find specialty mental health services on their own and large numbers reported that they were unwilling to share information with their child’s school.
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Medications and Choices:
The Perspective Of Families and Youth
This family-driven research study, provides new and compelling information which clarifies how families decide upon the use of psychotropic medication for their child.
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The Others, a group of teens in Worcester Massachusetts organized through a SAMHSA funded Statewide Family Network grant, was created in response to the expressed need for a social network and social activities for youth dealing with mental health issues. Youth groups such as the OTHERS are an untapped source of energy and creativity to raise awareness of the challenges faced by youth and the capacity to overcome them.
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Overcoming Barriers in Our Community: How are we Doing? is a report of the 2008 survey conducted by the Parent/Professional Advocacy League for the Children’s Mental Health Campaign. This report finds that parents and families are still facing major barriers in obtaining necessary mental health care services for their children, including wait lists, unclear diagnoses, lack of understanding of their child’s mental heatlh needs, and stigma. The report also shows that many parents face significant financial and insurance barriers to care, such as high out of pocket expenses and limited providers in insurance networks.
Speak Out for Access: The Experiences of Massachusetts Families in Obtaining Mental Health Care for their Children outlines a survey of over 300 parents conducted in 2002. The survey results describe significant problems with access to care, the sufficiency of information provided to families, and parents’ involvement in treatment.
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Family Support and Family Involvement: Building Skills, Knowledge and Participation reports on the results of two surveys in 2011.
The first survey was filled out by 90 parent support providers in Massachusetts who clearly stated that lived experience was the underpinning of their competence . The second survey had 232 parent respondents who outlined what they needed to participate in committees and other leadership roles.