We received more than 1,400 responses to our online survey to propose more appropriate language for students in special education with "emotional disturbance." Approximately 50 percent of the people responding were educators or school professionals. Another 25 percent of the responses were from family members and 20 percent from clinicians; 10 percent were advocates or students.
Based on input from the survey and a review of other states, the substitute language that will be proposed is students with an "emotional or behavioral disability." The proposal to change the language in Maryland statute and regulations will be introduced during the upcoming legislative session, which begins in January.
Please be aware that the scope of this legislation is limited only to the term "emotional disturbance" and does not in any way change the definition or eligibility for special education services. The U.S. Department of Education Office of Special Education Programs (OSEP) permits states to change the terminology, but not the definition or eligibility. The Coalition will be compiling a full report on the survey shortly.
We are optimistic the legislation will pass and that in some small way this new language will bring more awareness and less stigma to our children with mental health needs in special education.
Thank you to all who completed the survey!
- Jane A. Walker
Executive Director
Ready to FLI?
The Maryland Coalition's Family Leadership Institute is ready to conduct its next full session beginning in January 2009. Sign up now for your chance to learn how to advocate for your child and all of Maryland 's children in your community and across the state.
FLI is an intensive program for families caring for a child with mental health needs. Sessions are held on weekends from January through April. Prominent speakers, policymakers and advocates address the class on topics ranging from special education to skills-building. In addition to the knowledge learned, participants develop a network of friendship and support that lasts well beyond the formal Leadership Institute.
More than 100 families have graduated from FLI since 2004 and are actively at work making life better for Maryland's children.
Family members across the state are encouraged to apply. Space is limited to 25 participants. While there is no charge for the program, participants must make a commitment to attend all sessions, held Fridays and Saturdays in Timonium, Md.
The Institute opens on Jan. 9, 2009. Applications are available now by visiting http://www.mdcoalition.org/fli.htm . For additional information, contact FLI Director Y. Mimi Ryans at 410.730.8267 or mryans@mdcoalition.org.
Survey on Stigmatization
The Research and Training Center on Family Support and Children's Mental Health is sponsoring a survey on mental health stigmatization experiences of youth and caregivers.
If you are a young person ages 14–25 who has an emotional or mental health condition or a parent or other caregiver of a child between the ages of 14–25 with an emotional or mental health condition, you are asked to consider taking the RTC survey, which asks about personal experiences with discrimination or stigmatization. Results of the survey are to be published in Focal Point: Research, Practice and Policy in Children's Mental Health.
The online survey is completely anonymous and takes about 15 minutes to complete. It does focus on positive as well as negative experiences; completion of the survey offers the opportunity to win a $25 gift certificate to Amazon.com.
More information about the survey and the potential risks and benefits of participation can be found here. Contact Janet Walker at janetw@pdx.edu if you have additional questions about the survey.
To take the youth survey, visit:
http://www.surveymonkey.com/s.aspx?sm=vUyC0guSO3_2f0DT_2fQ_2fz91tw_3d_3d
To take the parent/caregiver survey, visit:
http://www.surveymonkey.com/s.aspx?sm=RDH20IkGeyfpyRbhreOqdA_3d_3d
Finally, for questions or information about your rights as a research participant, contact the Human Subjects Research Review Committee at Portland State University at 503.725.4288, 1.877.480.4400 or hsrrc@lists.pdx.edu .
Annual Luncheon Dec. 5
There's still time to get your ticket for the Maryland Coalition of Families' 9th Annual Luncheon—but they're going fast! The luncheon will be held at Turf Valley Resort and Conference Center in Ellicott City from 11:30 a.m. to 2 p.m.
A feature presentation this year will be a performance by the Mental Health Association's troupe Kids on the Block. As always, we'll also be doing our annual children's book reading. This year's book is Skippyjon Jones, and our guest reader is Del. Luiz R.S. Simmons of Montgomery County. The Coalition's annual awards—the Family Partnership Award, the Youth Award, the Jan Yocum de Calderon Award and the System of Care Award—also will be presented at the luncheon.
Contact the Coalition at 410.730.8267 to purchase your ticket.
System of Care Grant
Maryland was awarded a six-year system of care federal grant from the Substance Abuse & Mental Health Services Administration.
This is considered the top grant for children's mental health, and will roll out in Baltimore City with our office playing a major role.
The grant program supports the development of comprehensive, coordinated, community-based and culturally competent systems of care for children and adolescents with serious emotional disturbances and their families.
The program seeks to build innovative home and community systems of care and generate new knowledge about the most effective ways to meet the needs of these children and their families. Grant sites participate in a national evaluation to provide information on service outcomes, cost and program effectiveness.
In a system of care, mental health, education, child welfare, juvenile justice, and other agencies work in partnership to ensure that children with mental, emotional and behavioral problems and their families have access to the services and supports they need to succeed. These services and supports may include diagnostic and evaluation services, outpatient treatment, emergency services (24 hours a day, 7 days a week), case management, intensive home-based services, day treatment, respite care, therapeutic foster care and transition services.
Mental Health Coverage Parity Achieved!
A campaign, years in the making, came to a swift end with a stunning victory in Congress Oct. 3 with the passage of the Emergency Economic Stabilization Act of 2008, otherwise known as the “Bail-out Bill.”
This emergency bill addressing the nation's economic crisis incorporated several pending legislative pieces before final passage, including the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act, sponsored by Sens. Pete Domenici (R-N.M.), Edward M. Kennedy (D-Mass.) and Michael Enzi (R-Wyo.) and Reps. Patrick Kennedy (D-R.I.) and Jim Ramstad (R-Minn.).
The law requires group health plans to treat mental health and substance use disorder benefits in the same manner as they do medical and surgical benefits with regard to deductibles, co-payments and treatment limitations, out-of-network coverage. Click here to see the full text of the measure.
Maryland has had mental health parity legislation for many years; however, some of the provisions are different from the new federal parity law. Legislation will be proposed in the coming session in Annapolis to make sure Maryland 's parity law is compatible with the federal law.
Issues for Employed Parents of Children with Disabilities
The Sloan Work and Family Research Network, based at Boston College , has developed an action plan to address issues faced by working parents caring for children with disabilities. Its main recommendations are to advance the knowledge base by conducting more extensive research, and to increase the visibility of this issue for employers, policy makers and the public.
The network notes that one in seven children younger than 18—or approximately 10.2 million children—have special health care needs. A May 2008 panel meeting urged the undertaking of an extensive media campaign to educate the U.S. public about the often-hidden issues facing working parents caring for these children, including loss of income and the exceptional demands on their time to address their children's needs.
Some specific financial, physical and emotional impacts were highlighted:
- Median household income for these families is $38,332, compared with $48,936 for households raising children without disabilities—a $100 billion discrepancy in total earnings.
- Nearly 14 percent of parents caring for children with special health care needs spend more than 10 hours per week coordinating care, which can negatively affect their careers.
- Some 25 percent of workers have chosen to cut back or stop working entirely, and one-quarter have been fired at least once due to the exceptional care demands of their children with disabilities.
Read more about the issue by clicking here.
Upcoming Events
Transition Lecture Series—Nov. 12, 7–8:30 p.m., Kennedy Krieger Institute. “Health Care Decision-Making By and For People with Intellectual and Developmental Disabilities in Maryland,” by Judith M. Levy, MSW, MA, director of social work, Kennedy Krieger Institute. KKI, Greenspring Campus, Bowles Building, Board Room, 3825 Greenspring Ave., Baltimore. RSVP to Jenny Jones, resource coordinator, 443.923.2790 or 800.390.3372; e-mail ResourceFinder@kennedykrieger.org.
Around the World in Special Education in 1 Day—Nov. 15, 8:30 a.m.–3:30 p.m., Allegany County. Parents Place of Maryland Parent Training features a day of workshops for parents whose children receive special education services. RSVP to Debbie DiPaolo, dkmc1983@comcast.net or 301.689.3113. Christ Lutheran Church, Vocke Road & Route 168, Exit 40, LaVale.
9th Annual Maryland Coalition of Families for Children’s Mental Health Luncheon—Dec. 5, 11:30 a.m.–2 p.m., Turf Valley Resort, Ellicott City.
Transition Lecture Series—Dec. 10, 7–8:30 p.m., Kennedy Krieger Institute. “Taking Care of Yourself from a Mind/Body Perspective,” by Lana R. Warren, Ed.D, OTR/L, FAOTA, senior vice president of clinical programs, Kennedy Krieger Institute. KKI, Greenspring Campus, Bowles Building, Board Room, 3825 Greenspring Ave., Baltimore. RSVP to Jenny Jones, resource coordinator, 443.923.2790 or 800.390.3372; e-mail ResourceFinder@kennedykrieger.org.
Children’s Mental Health Day in Annapolis—Jan. 21, 2009, Miller Senate Office Building. Details to come.
