Young Families INSIGHTS
Fall 2002
Linda Swann, NAMI NC Young Families Program Coordinator, Editor
Linda Buzard, Layout Manager

Reported by Diane Weaver, NAMI NC Family Advocate

This year the convention was held in Cincinnati. With 2,700 attendees it was the largest ever. Imagine being among so many people who all understand one another’s struggles! The atmosphere was upbeat and electric! The following summarizes "highlights" of information presented at the convention. As always, NAMI (National Alliance for the Mentally Ill) focuses on the most recent, significant research in the field of mental illness.

We learned from NIMH (National Institutes of Mental Health) Acting Director Richard Nakamura, Ph.D.:

• Mental illnesses are roughly as disabling worldwide as cancer and cardiovascular disease. (My reaction: there should be equal media coverage of mental illness as there is of cancer and cardiovascular disease.)
• About one-sixth of the total Global Burden of Disease (as reported by the World Health Organization) is from mental illness.
• Of the top ten disabling conditions, five are mental illnesses (Unipolar Major Depression, Alcohol use, Bipolar disorder, Schizophrenia, and Obsessive-Compulsive Disorder, in that order).
• Unipolar Major Depression far outranks all other disabling conditions.
• The NIH research budgets for cancer and cardiovascular diseases are each 5-6 times the research budget for mental illnesses
• Contrary to old beliefs – new nerve cells may form in the human brain at least until age 77. (This news was met by thunderous applause from the older members of the audience.) Stress reduces neuronal growth and creation.
• Research shows a strong positive effect of physical exercise on neuron formation in mice. Said Nakamura: "Although this study was not on humans, when I saw the results I went out and bought a treadmill!"

Peter Jensen, M.D., Director of Columbia University’s Center for the Advancement of Children’s Mental Health, reported on research about parent and pediatrician attitudes toward childhood onset mental illnesses, as follows:

• An overwhelming majority of pediatricians thought parents were uncomfortable discussing mental health issues.
• A majority of parents reported little or no discomfort about the subject.
• 77% of pediatricians reported that they inquire about mental health issues at exams.
• Interestingly, 44% of parents reported their child’s pediatrician never asks about mental health.
• Primary physicians identify only 1 in 4 mental health problems in children. Parents often have to "raise a fuss" to get a diagnosis or referral.

This research suggests a tremendous need to increase and improve pediatrician-parent communication about mental health.

 Dr. Jensen went on to report:

• Other than homicide and accidents, suicide swamps all other causes of teen death combined.
• 28% of parents blame themselves for a child’s mental illness, even if they know better.

Scott Henggler, Ph.D., of the Family Services Research Center, Medical University of South Carolina reported on Multisystemic therapy (MST), a service delivery model that has been found to drastically reduce reoccurring offense rates in juvenile justice populations. Detailed information on MST is available at www.mstservices.com. The principles of MST include:

• Using multiple therapies that have proven effective.
• Empowering parents with resources and skills to change their child’s behavior for the long-term.
• Providing services where problems arise: home, school, neighborhood.
• Master’s level clinicians with very low caseloads.
• Parent-driven services; not therapist-driven.
• Stringent accountability standards to engage families and improve outcomes (how has the child’s functioning improved?)
• Intense quality assurance system.

Unlike the fee-for-service delivery model which rewards clinicians for keeping the easiest families in therapy for the longest time, MST rewards good outcomes for each child, no matter how difficult the situation may seem. MST is cost-effective: $64,000 is saved for every $5,000 spent.

Please look at me
And see my strengths.

Please listen to me
And hear my voice.

Please speak with me
As you talk to me.

Please touch my life
With the caress of a caring hand.

Please consider my wishes
As we discuss my choices.

Please ask what I want
Instead of telling me what I need.

Please know my dreams
To understand my aspirations.

Please include my designs
So I will accept your plans.

Please praise my deeds
Because approval works well for me.

Please give me a few minutes
As time is of the "utmost importance" to me.

Please teach me how to take care of me
So I can learn how to be independent and free.

Please help me find the support I need
To assist me in doing my very best for me.

Please understand that by working together
We will digest and continue to savor
What can only be called "the sweet taste of success."
Please …

1. Staff and families work together in relationships based on equality and respect.
2. Staff enhance families’ capacity to support the growth and development of all family members – adults, youth, and children.
3. Families are resources to their own members, to other families, to programs, and to communities.
4. Programs affirm and strengthen families’ cultural, racial, and linguistic identities and enhance their ability to function in a multicultural society.
5. Programs are embedded in their communities and contribute to the community-building process.
6. Programs advocate with families for services and systems that are fair, responsive, and accountable to the families served.
7. Practitioners work with families to mobilize formal and informal resources to support family development.
8. Programs are flexible and continually responsive to emerging family and community issues.
9. Principles of family support are modeled in all program activities, including planning, governance, and administration.

(Source: Family Support America, www.familysupportamerica.org.)

Recent research at Ohio State University posed the question: How does caring for a child with an emotional disorder affect the family? This research was led by Theresa Early, Department of Social Work, and involved surveying 164 families with children receiving mental health services in North Carolina. Ages of the children ranged from 3 to 12. The disorders covered the gamut, from mild to severe. The families/caregivers were surveyed twice over an 18 month timeframe in order to measure the effect of caring for a child with mental health problems over time. In other words, does stress increase or decrease over time when caring for a child with NBD or other emotional disorders? Parents and caregivers were asked to rate the level of stress, pleasure, and responsibility they were feeling in different aspects of their lives – home, work, relationships, and physical health.

It is no surprise that Early and her co-researchers found that the child’s ability to function and the overall well-being of the caregiver form a reciprocal relationship. The child’s behavior problems affect the caregiver’s sense of well-being; the caregiver’s stress level affects the child.

The significant finding is that over time the effect of the child’s behavior on the parent or caregiver intensified becoming more significant than the effect of the parent’s stress level on the child. In other words, the well-being of the caregiver reduced over time. The parent’s stress level does not decrease; the feeling of responsibility does not diminish.

"It's not just the children with problems who need care. The people caring for them also need help," Early said. Mental health services need to address the needs of primary caregivers. Recommendations include wraparound, community-based services that address the needs of the entire family. Counseling and other supports to families need to be provided on a long-term, open-ended basis. Future research will look at what these family supports look like.

The National Institute on Disability and Rehabilitation Research, the US Department of Education, and the Center for Mental Health Services, Substance Abuse, and Mental Health Services Administration funded this research.

(Source: www.osu.edu/researchnews/archive/children.html.)

—Students with SED have lower grades than any other group of students with disabilities.
—They are retained at grade level more often.
—High school students with SED have an average grade point average of 1.7 compared to 2.0 for all students with disabilities and 2.6 for all students.
—44% received one or more failing grades compared to 31% for all students with disabilities.
•Graduation Rates
—42% of youth with SED earn a high school diploma as opposed to 50% of all youth with disabilities and 76% of similarly aged youth in the general population.
• School Placement
—18% of students with SED are educated outside of their local schools compared to 6% of all students with disabilities.
•School Absenteeism
—Students with SED miss more days of school per year (an average of 18 days) than do students in any other disability category.
•Dropout Rates
—48% of students with SED drop out of grades 9 through 12 as opposed to 30% of all students with disabilities and only 24% of all high school students.
—Another 8% of students with disabilities, including students with SED, drop out before grade 9.

•Encounters with the Juvenile Justice System
—22% of students with SED are arrested at least once before they leave school as opposed to 9% of students with disabilities and 6% of all students.
—58% of youth with SED are arrested within five years of leaving school as opposed to 30% of all students with disabilities.
—Of those students with SED who drop out of school, 73% are arrested within five years of leaving school.

Compared To All Students With Disabilities:

1. Students with SED are more likely to be placed in restrictive settings and are more likely to drop out of school;
2. Their families are more likely to be blamed for the students disability and are more likely to make tremendous financial sacrifices to secure services for their children; and
3. Their teachers and aides are more likely to seek reassignment or leave their positions.

Prepared by the Chesapeake Institute of the American Institutes for Research
for the US Department of Education, Office of Special Education and
Rehabilitative Services, Office of Special Education Programs
September 1, 1994

(Source: http://www.mo-span.org/nationalagenda.html)

Dr. Mel Levine, MD, March 27, 2002, The Oprah Winfrey Show

Dr. Levine is the founder of Schools Attuned, a comprehensive professional development and service program offering educators new methods for recognizing, understanding, and managing students with differences in learning. Check out the website: www.allkindsofminds.org.

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