Testimony of Family Voices NJ

Testimony of Family Voices NJ @ SPAN
on the 2005 Maternal & Child Health Block Grant

Family Voices-New Jersey at the Statewide Parent Advocacy Network is pleased to provide testimony on the 2005 Maternal and Child Health Block Grant. As advocates and parents of children with special needs, we strongly support the programs that have been developed with Maternal and Child Health funds. Areas of continuing concern for Family Voices include infant mortality, immunizations, lead screening, newborn screenings, asthma, nutrition/fitness, dental care, Medicaid managed care/EPSDT, mental health, and uninsured children. We were pleased to see the issues of cultural competency, as well as health/safety in childcare, addressed.

We are concerned that infant mortality for black children in NJ is still triple that of white infants, and that there is also a triple rate of pregnancy for black adolescents. We support the concept of the Healthy Start and BIBS programs to address these issues. We encourage the Department of Health and Senior Services to partner with the NJ Department of Education to reach adolescents in school with programs that have demonstrated effectiveness in preventing adolescent pregnancy, in contrast to the “abstinence only” programs that are not effective.

We were pleased with the issue of adolescent risk behaviors being addressed, particularly given the disturbing findings of the most recent Youth Risk Behavior Survey.

We strongly support the continuation of collaboration with the Build NJ program to improve services to and outcomes for NJ’s youngest members, and encourage the Department to align its reapplication for the Early Childhood Comprehensive Systems (ECCS) grant with the goals of the Build initiative.

Breastfeeding is also a key issue contributing to healthy infants; awareness of its importance and resources for support, especially for families at greatest risk, must be increased. Unfortunately, this has decreased in recent years. Immunizations and lead screenings are essential; NJ is dead last nationally in EPDST services. We were pleased to see the formation of the EPSDT workgroup and Medicaid Alliance, both of which we joined, to address these issues. We support the use of the statewide universal childhood immunization registry, but are concerned that immunization rates decreased this year. The recent emphasis on dental care will also help reduce related health problems.

We also support the plan’s focus on newborn screenings, hearing screenings, and asthma as important issues. We provided testimony to HRSA on newborn screening. We correlated NJ findings with the 29 conditions recommended on the national level as primary and they all matched except SCAD (Short-chain acyl-CoA dehydrogenase deficiency) which was recommended by NJ but a secondary target nationally; 3 of the secondary conditions for future consideration in NJ were primary nationally, so our state was almost a perfect match with national objectives. The initiative of NJ Statewide Parent to Parent, funded by the NJ Department of Health and Senior Services, continues to focus on families of children with deafness and hearing loss and will contribute to earlier detection, treatment and family support.

We strongly support the proposal to use the Children with Special Health Care Needs Registry for children with asthma. Asthma can be an extremely debilitating disease, and can lead to significant physical, mental, academic, and behavioral problems if not addressed and monitored on an ongoing basis. We have found that if Managed Care Organizations have case management for children, it is usually for asthma. We were also pleased to see the initiatives continue to address nutrition and fitness in the face of the rising epidemic of obesity in children and related health conditions such as diabetes. Again, we encourage closer collaboration with the Department of Education to focus attention in school on topics such as healthy snacks, breakfasts and lunches, and expansion – not elimination or reduction – of gym and other physical activities in school. As indicated in all the research supporting Coordinated School Health Programs from the Centers for Disease Control and Prevention, children who eat nutritious foods and have adequate daily exercise perform better academically than children who eat junk with no exercise.

We strongly support the continued support for county-based Special Child Health Services Case Management Units, which provide unparalleled attention to the needs of children and their families, as well as the maintenance and expansion of SPAN Family Resource Specialists in the county case management units and would like to see all counties covered. Family Voices receives funding from the Department as part of SPAN’s Family WRAP project, and would like to take this opportunity to thank the Department for its continued support. Please note: During the first 9 months of this fiscal year, contacts for the Family Voices Coordinator alone for training and technical assistance were 12,038 for parents and professionals, not the numbers in the report (662), so any additional support would be greatly appreciated. It is critically important to also maintain funding for NJ Statewide Parent to Parent as well. Each of these programs provides families with information and support from other families who have expertise that no one else has – the expertise of experiencing the same challenges as the families with special health care needs who come to us for help.

We serve on the NJ Hospital Association Covering Kids outreach program for Family Care. We are concerned that Rutger's newest study showed 101,000 eligible children still not enrolled in Family Care. All NJ children must be covered by health insurance. Lack of insurance contributes to all of the areas of concern noted in the MCHB block grant application.

We were pleased to collaborate with SCHEIS on the Champions for Progress grant to enhance transition for children with special needs to adult systems of care, and would like to take this opportunity to thank the SCHS Case management unit staff as well as Pauline Lisciotto and Bonnie Teman of the Department for their steadfast support of children and adolescents with special health care needs and their families, and particularly their current focus on the critical area of transition to adult life.

We strongly support and are involved in the “Children’s Behavioral Health Services” program initiative on children’s mental health. Also, the use of the mobile crisis unit will greatly aid families in need. There has been a tremendous increase in the number of calls we receive regarding mental health issues in children. The NJ Coordinator has taken both the parent and trainer Visions for Tomorrow courses at NAMI and is teaching the class to families in English and Spanish. We also support the governor’s workgroup on Post Partum Depression, which is particularly important for mothers of infants with special health care needs.

In general, we support the use of the “medical home” model developed by the American Academy of Pediatrics (AAP). We’ve distributed medical home literature at conferences, serve on the AAP-NJ Chapter Committee for Children with Disabilities, and the Healthy Childcare Advisory Council, to collaborate on how children with special needs receive health care to maximize their development. We are eager to partner with the Department and the American Academy of Pediatrics-NJ Chapter to enhance medical homes for children in our state. We are pleased that healthcare and childcare issues are being considered together, rather than separately.

We are pleased that NJ has become the first state to require cultural competence training for doctors[1], but are concerned that culturally competent care is not universally available in our state. The NECTAC meeting identified the Hispanic population, followed closely by the Asian population, as underserved in early intervention statewide. The NJ Hospital Association conference on the uninsured identified the Hispanic, followed by the African American, population as lacking insurance and thus having health disparity outcomes. This year’s conference also found that families have children eligible for Family Care but are unaware they can sign up mostly due to limited English proficiency. The Association of Children in NJ identified Hispanic families also as underserved/underinsured. Our own attempts to contact NJ hospitals identified that virtually every hospital’s message (we never reached a human being) was in English, so that families that spoke other languages would not be able to access services by contacting the hospital by phone. We encourage the Department to work closely with the NJ Statewide Network for Cultural Competence, of which we are members, to address these and other issues that negatively impact the health of diverse families in our state.

Thank you for the opportunity to comment on the proposed plan, both as an advocate on behalf of Family Voices-NJ/NJ’s Family to Family Health Information and Resource Center, and as a parent of a child with special needs who has received, and continues to receive, assistance from the NJ Title V program.

[1] SPAN’s longstanding collaboration with the Boggs Center/University Center of Excellence on Developmental Disabilities provides all third year medical students in their pediatric rotation at UMDNJ with a full day on developmental disabilities followed by an evening spent in the home of a family and their child with disabilities/special health care needs. This builds another kind of competence within future doctors – the competence of being able to work more effectively with families and to emphasize with their situation and understand their child’s special needs. We encourage the Department to work with other state medical schools to implement this invaluable program, which is often cited by UMDNJ medical students as the most meaningful experience of their pediatric rotation.

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