About Project Access
Project Access: Improving Care for Children with Epilepsy
Every year, approximately 50,000 new cases of epilepsy are diagnosed in children and adolescents under the age of 18. Unfortunately, organized systems of services are not in place to provide timely access to care that could improve the quality of life for these children and their families. Children and youth living in medically underserved and rural areas as well as racial and ethnic minority populations often lack access to a medical home and encounter difficulties in having their epilepsy diagnosed. The shortage of pediatric neurologists and epileptologists further hinders access to early detection and treatment.
The Children’s Health Act of 2000 authorized the Department of Health and Human Services to implement demonstration projects in medically underserved areas to improve access to health services and encourage early detection and treatment for children with epilepsy and seizure disorders.
Phase II
HRSA Project Access – Phase II 2007-2010
Project Access is a program sponsored by the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA) http://www.mchb.hrsa.gov/. The purpose of the HRSA program is to improve access to comprehensive, coordinated health care and related services for children and youth with epilepsy residing in medically underserved (MUAs) and rural areas. Funding was awarded for two priority areas: Priority 1 provided state implementation grants to improve access to care for children and youth with epilepsy and seizure disorders through a community-based system of services. Priority 2 funds a cooperative agreement to support the National Center for Project Access http://www.accessforepilepsy.org to provide national leadership to the Division of Services for Children with Special Healthcare Needs (DSCSHN) on improving access to comprehensive, coordinated health care and other services for children and youth with epilepsy.
Epilepsy Foundation of Metropolitan
The Epilepsy
Foundation of Metropolitan New York will partner with local hospitals and
community health clinics to improve the system of care for Caribbean Hispanic,
Asian Chinese and Caribbean-non- Hispanic immigrants in
The Epilepsy Foundation of Metropolitan New York
has 40 years of experience as
Located in one of the United State’s major entry
points for immigrants, The Epilepsy Foundation of Metropolitan New York wishes to focus this project on
the three most dominant groups of recent immigrants as defined by the New York
City Department of Planning http://www.nyc.gov/html/dcp/home.html;
the Caribbean Hispanic, the Caribbean non-Hispanic and the Asian–Chinese,
within the medically underserved communities in each borough as defined by
HRSA. We will develop a medical access model for children and youth with
epilepsy and pattern this model after the medical home prototype, which will be
the first of its type in
New York
Comprehensive Epilepsy Centers/Centros Comprensivos para la Epilepsia
- Montefiore - The Epilepsy Management Unit
-
- The
- New York
-
New York Neurology Departments/Departamentos de Neurologia
-
- Beth
-
National Centers
Six National Outcomes for Children and Youth
with Special Health Needs and Corresponding
National
Centers
1. Families are Partners
Family Voices is a national family organization
that promotes family participation and satisfaction via a network of 40,000
families and friends, a volunteer coordinator in each state, and ten regional
coordinators. Family Voices serves as a national clearinghouse for information
and education about ways to assure and improve health care for children with
disabilities and chronic conditions. http://www.familyvoices.org
2.
3. Early and Continuous Screening
National Center for Hearing Assessment/Management
(NCHAM) supports early and continuous screening and works to ensure that all
infants (newborns) and toddlers with hearing loss are identified as early as
possible and provided with timely and appropriate audiological, educational,
and medical intervention. http://www.infanthearing.org
4. Adequate Insurance
Catalyst Center: Improving Financing of Care for
Children and Youth with Special Health Care Needs seeks to promote health
coverage of all CYSHCN, eliminate underinsurance, disseminate innovative
financing methods for services and enhance knowledge and collaboration among
stakeholder groups around financing issues. Methods include short-term
technical assistance to stakeholders, in-depth technical assistance to selected
state teams, dissemination of existing research on financing, a series of small
national “summit” meetings and new research on key financing topics. http://www.hdwg.org/projects/catalyst.htm
5. Community-Based Systems of Services and Satisfied Parents
Champions for Inclusive Communities (Champions InC)
is striving to assist communities in building systems of services and supports
that families can access easily. Working closely with state CYSHCN directors,
Champions Inc is creating a community recognition program to highlight the
strategies that communities are using to help families find the services and
supports that they need. http://championsinc.org
6. Transition to Adult Life
Healthy and Ready to Work (HRTW): What's HEALTH got
to do with transition? EVERYTHING! HRTW provides information and connections to
health and transition expertise nationwide--from those in the know, doing the
work and living it! http://www.hrtw.org
Related National Centers
National Center for Cultural Competence (NCCC) supports family participation and satisfaction and strives to increase the capacity of health and mental health programs to design, implement, and evaluate culturally and linguistically competent service delivery systems. http://gucchd.georgetown.edu/nccc/index.html
CAHMI Data Resource Center is part of the Child and Adolescent Health Measurement Initiative and provides leadership and resources for measuring and communicating information about the quality of healthcare for young children (0-3), teens (12-21), and children with chronic conditions. www.cshcndata.org
http://www.accessforepilepsy.org
Products and Tools
· Epilepsy Tools (Seizure Action Plan, Epilepsy Care Plan, Home Medication List)
· Health Care Transition Plan (Ages 14-17)
· English Educational Materials
· Spanish Educational Material
· 
Mandarin
Education Materials
Community Resources
Please visit the Epilepsy Foundation’s website for parents: www.epilepsyandmychild.org. This is comprehensive website includes a variety of useful information for parents, families and caregivers on epilepsy, its impacts on the family, and educational aids to assist the family in caring for a child with epilepsy. Some topics of interest include fears and concerns, treatment options, and back-to-school safety, and first-aid information.
Contact Us
We provide information in Spanish and Mandarin
Tel: (212) 677-8550
Fax: (212) 677-5825
www.efmny.org
www.efa.org
