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Family Voices is a national network on behalf of children with special healthcare needs. Our state coordinators are all parents of children with special needs and help families navigate the healthcare system as well as provide resources on specific conditions. 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 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 counts against the child's lifetime cap 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.
Need help with unpaid
medical expenses?
Family Healthcare Story Book:
Bright Futures:
Family Matters
Friday's Child Newsletter - November issue "Friday's Child" Newsletter Archives
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: Education: Locally,
we
co-hosted the transition fair for Hamilton PAC, completed
the survey on parent advisory groups, were invited by the
superintendent to the district facilities/program committee
and appeared in the district video, newsletter and local
paper on the referendum.
We co-hosted a workshop on self-assessment/monitoring
in collaboration with our district, were invited to the
steering committee,
and took the LRC training on district self assessment.
Statewide, we attended the dispute resolution
training for special ed. directors. We participated in
Disability Mentor Day, had lunch with the mayor, and were
covered by News 12 NJ.
We were trained by Family Support: Locally, NJ was chosen as 1 of 6 states to launch NAMI Basics for parents and we were chosen as the only Mercer Co. representative and NJ as the pilot in Spanish. Statewide, we met with legislators and testified on family leave insurance, which passed in NJ and was covered in the media. We were again interviewed by WDVR radio. We were invited to the statewide caregiver summit and participated in the National Alliance for Caregiving webinar on an advocacy agenda. We obtained a Governor's proclamation for caregivers month. The coordinator is now a member on the Board of Caregivers of NJ. Nationally, we were interviewed by the Philadelphia Inquirer, Better Health & Living, Lutheran Woman today and asked to be a researcher for NFCA including stats/reports, booklist and asked to contribute to 4 blogs (NFCA-NJ, NFCA-national, Disaboom, and Health Central). We contacted legislators on Lifespan respite. Health/Medical Home:
Locally,
we
facilitated NAMI speaker meetings on children's mental
health, and hosted a
joint NAMI Kids and Lifespire event.
Statewide, we testified on the Title V
block grant and met with the Medicaid Director on Family
Care cuts. We presented WRAP to the NJ Primary Care
Association. We participated in NJ Citizen Action
healthcare for all conference and statehouse press
conference as well as the
press conference on
CMS regulations/SCHIP.
We commented on NJ special Medicaid, proposed
NJ Early Intervention regulations, and Regional Early
Intervention Collaboratives as the single point of entry.
We contacted the governor on the 10% solution (DD
waiting list).
We also requested regulations on the CCW (Community Care
Waiver) for DDD.
Nationally, we participated in CMS calls on Medicare,
home health/hospice/DME, and long term care. We signed onto
the ADAPT statement on CMS regulations. We commented on the
Medicaid rehabilitation regulations, CMS SNPs (special needs
plans) as well as targeted case management. We participated
in a Medicare Part D conference
call, SCHIP webinar, and reviewed MCH Knowledge Path on
mental health and included resources regarding eliminating
aversives. We
participated in research with the GAO study on mental
health, and Media contacts for Family
Voices included:
Bergen Record, Washington Post, ACNJ Newsletter,
Special Parent magazine, Star Ledger, News 12 NJ, NJN News, WZBN TV, Fox TV, 9-WOR TV, NJ 101.5
radio, WDVR radio, Better Health & Living, Philadelphia
Inquirer, American Hospital Patient Guide, Windsor Heights
Herald, Hamilton Post, Exceptional Parent, Visions Metro
Weekly, Daily Record, Gannett newspapers, CBS News,
NBC News, ABC News,
CBS radio, NPR (National Public Radio), 1000 Voices national
newsfeed, Lutheran Woman Today magazine, Trenton
Times, cable community bulletin board, district
cable/website/video, township cable/website. 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
NEW! Family-Centered Care Self Assessment Tool Cuidados Administrados de Medicaid para Niños con Necesidades Especiales en Nueva Jersey Build a Bright Futures Team for Your Children's Good Health Medical Issues Facing Special Needs Children - Key Issues Testimony
and Letters regarding Health Care Issues
Special Child Health Services County Case Management(.pdf file) Figuring Out How to Pay Your Medical Bills
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.