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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.
What
is Family Voices? My daughter Stephanie spent her first two weeks of life hooked up to a
respirator, heart monitor, feeding tube, and IV in the neonatal
intensive care unit at Children’s Hospital of Philadelphia.
In addition to being “in survival mode”, we also had to
worry about health costs even though we had double coverage. The first bill for Stephanie’s NICU stay was $28,000 and I
figured we were already up to $60,000 by the time we brought her home.
I was on a 10-month leave of absence and another 4 month leave
6 months later. We
didn’t qualify for DDD respite, SSI, children’s catastrophic
illness program, or any other programs because we both worked and made
too much money. We went
into debt and almost lost the house.
I knew I needed help on information regarding children’s
health issues from the beginning.
It became more apparent as time went on.
Stephanie was developmentally delayed and it took me 1 ½ years
to resolve her first claim for physical therapy even though it was
listed as a covered expense in both employee handbooks, and I was
assured over the phone that it was covered.
(Lesson learned: Always get a written, predetermination of
benefits.) That’s when
I started getting information from Family Voices.
Family Voices is a national,
grassroots network for information and education concerning
children with special health care needs. As of the last
count in 2002, we had 45,000 members across the country.
There are volunteer coordinators in each state, 10 Regional
Coordinators, and staff working in several locations around
the country. To find the coordinator in your state, please
call the national office toll free at (888) 835-5669 or go
to
www.familyvoices.org.
Family Voices is active in issues including:
Medicaid, managed care, waivers, childcare, insurance
issues. Coordinators have tackled issues such as testimony
(editorials/op-ed) on special education funding reform,
special education policy statements, and the reauthorization
of the Individuals with Disabilities Education Act. Family
Voices was involved in national SSI teleconferences,
resulting in free instructional videos for professionals and
families (Spanish also.) We also worked with in the
consortium producing in the national videoteleconference
“Bright Futures: Violence Prevention” of the National Parent
Consortium/Maternal and Child Health. Bright Futures for
Families involved a series of materials and publications
promoting healthy children and families. For more
information, see
www.brightfuturesforfamilies.org.
Family Voices collaborated with managed care focus groups and participated in the RFI (request for information) conference calls on managed care regulations, participated in the Medical Assistance Advisory Council meetings, LSNJ Medicaid workgroup as well as some Medicaid HMO advisory committees, ACNJ's child health month and also medication administration in childcare committees, and joined the NY Mid-Atlantic Consortium for newborn screening. In addition to attending conferences, Family Voices has also presented on topics such as special needs daycare, caregiving, respite, health care financing, cultural competency, and early intervention. In addition, articles have been written on nursing a medically-fragile infant, feeding problems/poor weight gain, developmental delays/partnerships between parents and professionals, nephrology (kidney disease) resource list, parental overprotectiveness of special children, special needs daycare, medical issues affecting children with special needs, special camps, parent empowerment, caregiver stories, etc. Recent highlights include: We participated on the NY SED (mental health) waiver conference call to replicate a Medicaid waiver in NJ as well as a HIPAA (medical records privacy) call on children's mental health. We met with Medicaid on the FamilyCare cuts. We commented on NJ Citizen Action single payer healthcare system and Medicare Part D (prescription plan) Chapter 7. We contacted legislators regarding Lifespan Respite, Head Start reauthorization, Statewide Family Network Program, and Medicaid funding cuts. We commented on the Family Medical Leave Act, signed onto the Healthy Families Act, and commented on SCHIP at the NJ Citizen Action press conference. We commented on Exceptional Parent magazine's statement against the "Ashley Treatment". We participated in the national conference call of the American Association of Intellectual & Developmental Disabilities as well as the National Council of State Legislatures call on the medical home. We participated in the national conference call on data from the Catalyst Center and reviewed the Health Central website suggesting adding children with special needs and disability specific information. We helped develop a parent guide for the National Alliance for the Mentally Ill, joined their planning committee resulting in 1/3 of the topic meetings addressing children's issues, helped develop the national curriculum for Visions for Tomorrow, and reviewed their national strategic plan. We met with legislators and testified on family leave insurance which passed the Senate. We were invited to the statewide caregiver summit and participated in the National Alliance for Caregiving webinar on an advocacy agenda. We testified on the Title V block grant. We presented WRAP to the NJ Primary Care Association. We participated in CMS calls on Medicare, home health/hospice/DME, and long term care. Lastly, we were recently asked to help develop a Bright Futures parent toolkit. We have literature on managed care, Supplemental Security Income, children’s health insurance program, Medicaid, insurance issues, etc. Most of our information is available in English and Spanish. Membership is free and members receive a newsletter every other month. Although we do not charge membership fees, we do gratefully accept donations and promise to put them to good use. If families or professionals have questions on medical issues affecting special needs children, Family Voices can help. Lauren
Agoratus, Special
thanks to Julie Keys, Family Voices Communications and Development
Coordinator
These Are Our Children
These Are Our Principles
Medical Issues Facing Special Needs Children - Key Issues Testimony
and Letters regarding Health Care Issues New
Jersey Early Intervention System
National Family Voices Organization Website New Jersey Department of Education Website
There are many ways to help us make sure that children with special health care needs in New Jersey receive the services they need! Email us at: OR CALL US AT: OR Send your name, address and phone number to: Family Voices - NJ
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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.