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Survey Identifies Unmet Needs Among Children with Special Health Care Needs
More than 240,000 children ages 0-17 have special health care needs in Maryland, about 15.5% of all children living in Maryland. That's enough children to fill the Ravens Stadium 3.5 times!
In 2010, The Parents' Place (PPMD) in partnership with the Office for Genetics and Children with Special Health Care Needs (OGCSHCN) at Maryland's Department of Health and Mental Hygiene, conducted a statewide survey of parents to identify needs, gaps in services, and to hear from families about what works and doesn't work for their child.
The survey gathered information from 939 parents statewide; of those, 781 had at least one child with special health care needs. Here are some results from families responding to the survey.
- 54.5% of families reported that their child's insurance did not pay for all the health services their child needs
- 37.7% of families had to cut back or stop working because of their child's condition
- 12.7% reported their child was uninsured at some point during the last 12 months
- 39.2% reported their child had an unmet health care need
PPMD and OGCSHCN developed factsheets on the unmet needs identified by families through this survey. The factsheets provide information on unmet needs by region and statewide. Read more |
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Special Education Conference for Parents
Around the World of Special Education will be held on October 22, 2011 from 8:30am to 3:30pm at Christ Lutheran Church in La Vale. Conference topics will include:
Assistive Technology
Discipline
Understanding Parental Rights
Learning Disabilities
Challenging Behaviors
Extracurricular Activities
For more information contact Debbie DiPaolo.
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Discovery Days for Students with & without Disabilities
Since 1999, Port Discovery Children's Museum has hosted Discovery Days, special days of the year that are dedicated to students with disabilities. Students visit the Museum and explore the exhibits, programs, and special activities in a safe and fun environment.
Discovery Days are offered each year, and admission is free for Maryland school students. Each day features special activities, performances and information tables. Advance registration is required.
In addition, Port Discovery is also hosting Discover Me Days that are designed for inclusive groups of students. For more information on both visit the Port Discovery website.
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OSEP Spanish Glossary
This web-based glossary comes about through the collective and collaborative efforts of eighteen U.S. Department of Education, Office of Special Education Programs (OSEP) funded Parent Centers serving the diversity of Spanish-speaking families with children with disabilities across the U.S. It is designed to address the need for commonly accepted Spanish terms for translating information on IDEA for families from English to Spanish. While it has been specifically designed for use by parent centers, this glossary is also useful for families, state and local schools systems, and others who are working with Spanish speakers.
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Consortium of Care Highlighted by AMCHP
Maryland COC has been highlighted as a success story in this month's newsletter put out by the Association of Maternal and Child Health Programs (AMCHP). To view the newsletter and the article click on the link. Congratulations to you all and thank you for helping to make this such a great success. Link
Also please mark your calendars for the next COC quarterly meeting on October 26 from 10-12:30. The meetings are open to anyone interested in children with special health care needs. For more information on Maryland's COC contact Kelly Meissner.
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Ryan Colburn AMCHP Scholarship
The Association of Maternal & Child Health Programs (AMCHP) is pleased to announce the Ryan Colburn Scholarship Fund (RCSF). To honor Ryan, son of AMCHP member Susan Colburn who was the 2010 Merle McPherson Family Leadership Awardee, AMCHP will award a scholarship to one youth leader to attend the AMCHP Annual Conference 2012. The scholarship is valued at $1800 to cover airfare, lodging and per diem.
The Conference will be held February 11-14, 2012 at the Omni Shoreham Hotel in Washington, DC. The conference will provide participants with strategies, tools and resources to develop, enhance, and sustain vital MCH programs and services at the national, state and local level for women, children and families.
It will be a tremendous networking opportunity as over 600 individuals are expected to attend the conference including directors and staff of state maternal and child health and children and youth with special health care needs (CYSHCN) programs, as well as representatives of the MCHB, the CDC, families of CYSHCN and national research, policy and advocacy organizations. Several events are designed especially for family representatives.
AMCHP is now accepting applications for the Ryan Colburn Scholarship. The deadline is 5:00 pm ET, Friday, October 14th. For more information on how a youth leader in your state should apply for this scholarship, or for more information about the annual conference visit AMCHP.
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State Disability Resources and Organizations
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The National Dissemination Center for Children with Disabilities offers a list of resources and organizations that support families of children with disabilities. | | Find organizations in your state that address disability-related issues. Includes state agencies, state chapters of disability organizations, parent groups, and parent training and information projects. NICHCY |
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Families Needed: Share Your Opinions on Flu Prevention and Treatment with CDC
Family Voices is partnering with the Centers for Disease Control (CDC) in a campaign to learn from families of CYSHCN about their knowledge, attitudes, and beliefs related to influenza prevention and treatment. If you are a family member of a child with disabilities or special health care needs, please take time, right now if possible, to complete a brief survey (about 15 minutes):
The knowledge, opinion, and experiences of families are very important and will help CDC in their work to improve the health and well-being of all children with special health care needs.
Responses will remain anonymous. More information about this survey may be found in the CDC Invitation letter
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Save These Dates!
September 27, 2011
Open House
3:00pm-7:00pm
Towson, MD
October 5 - 6, 2011
October 6, 2011
Coppin State University
October 16-17, 2011
Ocean City, MD
October 24-27, 2011
Baltimore, MD
Check the PPMD online calendar for time, location, and registration information for these and many other training opportunities. www.calendarwiz.com/ppmd
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Immigrant Students Rights to Attend School
Public schools, by law, must serve all children. Denying children of undocumented workers access to an education is unconstitutional and against the law. More information
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Resources for Military Families
A great resource for military families is the Specialized Training of Military Parents, or STOMP, a federally funded Parent Training and Information Center (PTI) established to assist military families who have children with special education or health needs stationed worldwide. STOMP will also help connect you with the PTI stateside. Link
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HHS Secretary Adopts New Recommendations for Newborn Screening
HHS Secretary Kathleen Sebelius adopted the recommendation that Critical Congenital Heart Disease (CCHD) be included on the Recommended Uniform Screening Panel (RUSP). RUSP is the national recommendation informing states of the congenital conditions that should be included in each state newborn screening program. Secretary Sebelius determined that intervention for this condition during the newborn period is critical to saving lives. Link
For more more newborn screening information, click here. |
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PPMD Training and Workshops
The Parents' Place presents a variety of workshops, seminars, and training programs for parents. Topics include special education, health care advocacy and information, and parent leadership. Check our online calendar regularly for a listing and description of our training programs. |
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