Need help with unpaid medical expenses?
Family Healthcare Story Book:
Where can I find information on my child's condition?
The Statewide Parent Advocacy Network
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through this national network, Family Voices provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care.
If families or
professionals have questions on medical issues affecting
Do you have a child with special health care needs?
Do you need information about health care or insurance?
Would like to help promote responsive, accessible, quality health care and health insurance?
Call Family Voices of New Jersey!
We provide information, assistance and outreach in working toward better health care systems for families of children with special health care needs in New Jersey. Family Voices tackles medical issues affecting special children such as managed care, insurance issues, SSI, and new changes in special education. We have videos, literature, and a national and statewide newsletter-all of which are free. Family Voices also has a speaker’s bureau for presentations for families and professionals as well. Call us at (973) 642-8100.
Special Education Medicaid Initiative
Special Education Medicaid Initiative Schools are sending letters for parents to consent to access Medicaid for related services such as therapies on IEPs. Typically, if the district wants to access employer insurance, parents need to be aware that if they sign consent, it may count against the child's lifetime or yearly cap if their plan was "grandfathered" under healthcare reform and still has a limit on benefits. However, if they have a Medicaid HMO it's a win-win because it doesn't count against the child's cap, and the schools can get federal matches and provide more services. But there's a glitch. If the child has a Medicaid waiver it will count against their medical expenses. What they should do is write that they're not consenting but that the district has made them aware of the Medicaid initiative. They do not need to put the reason why they're not consenting. Otherwise districts get penalized if there's no proof they informed parents. Please note that on page 5 of the regulations it states "In order to avoid duplicating claims, LEA [school district] service claims will not be processed for a student who also receives services under a waiver program." so hopefully if a parent is unaware and signs, it's a safety net. Please note that Medicaid HMOs should not be requesting IFSPs (early intervention) or IEPs (special education) and reducing services at home because a child gets some services at school. The school services are needed for FAPE (free appropriate public education) and home services are medically-necessary so they're not the same. If parents have problems, please contact us or fill out the Medicaid problem form http://www.spannj.org/familywrap/Medicaid_Problem_Report_Form.pdf
is Family Voices?
Family Voices-NJ is the New Jersey chapter of National Family Voices, which advocates to “keep families at the center of children’s healthcare,” with a special focus on children with special healthcare needs. We are also part of SPAN’s Family to Family Health Information Center (www.spannj.org/Family2Family) and the Integrated Systems Grant (www.spannj.org/Family2Family/medical_home/Core_outcomes_information.pdf) for children with special needs.
These Are Our Children
Our children with special health needs are like other children. They want a healthy, happy childhood. They want to grow up to be productive adults. They live in our cities, towns and rural areas. They go to school and enjoy community events.
Our children have challenging health conditions that complicate their lives. Some have special physical, mental or emotional needs. Some live with a chronic illness. Some have a brief but life-threatening medical condition. Some of our children need only an accurate diagnosis, routine treatment or monitoring while others will require life-sustaining technology, treatment and medicines throughout their lives.
Our children receive their care from a combination of financing and/or delivery systems. Many New Jersey children with special health needs receive care coordination services from Special Child Health Services Case Management Units.
As families, we live every day with the uncertainties and challenges of chronic childhood illness or disability. We know that every child is just one day away from having a special health care need.
These Are Our Principles
Families are the core of any health system and should be respected and valued for our expertise and commitment to our children.
Combining talents and resources in a good family - professional partnership creates the best relationship for managing the care of our children with special health care needs.
Universal access to quality primary and specialty health care should be available at a reasonable price for all families.
An effective, flexible health care system should be guided by medical and family needs, not bureaucratic policies.
Comprehensive, coordinated, community-based care should be available for all families.
Cost effective care should focus on outcomes, family choice and reduction of bureaucratic, duplicative procedures.
Families and health care professionals should be responsible for quality assurance on heath care financing and delivery.
Special Child Health Services County Case Management(.pdf file)
There are many ways to help us make sure that children with special health care needs in New Jersey receive the services they need!
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Family Voices - NJ