Support for Families of Children with Special Healthcare Needs

Submitted by Julie McKinney on Mon, 12/15/2014 - 13:59
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  • 6 Comments

Hi Everyone,

We have talked about how hard it is for adult basic education students to access healthcare and more recently, to access and use health insurance that they may have just recently gotten for the first time. You can imagine the extra burden for those who have children or other family members with special healthcare needs. Family Voices is an organization that provides support to these families.

Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.

You can click on your state to find out how your state office can help you. The organization uses a family-centered approach and makes it easy to talk to real people so you don't have to wade through the paperwork or website to find what you need. (This is why it can be a good thing to share with adult learners.) There are lots of resources, including Family-to-family Health Information Centers, listserves to communicate with other parents, workshops, and referrals to other services. If you have a student who may need this type of support, please share this!

Thanks,

Julie

Comments

Hi Julie,

Thanks for sharing information on Family Voices.  Do they have something specific for persons with disabilities, and if so, for which disabilities?  I am referring to possibly adaptations in the way their material is presented.

Rochelle Kenyon, SME

 

Hi Rochelle,

I don't think they necessarily put out information in a special way, but they are good about letting you come in and talk face to face. They mostly help people figure out what services they are eligible for, and then help them access those services. Their target audience is families who have kids with disabilities, and they work with any type of disability.

Julie

Hi all,

So glad to see this discussion.  Just wanted to let you know that I'm the State Coordinator for Family Voices NJ.  :  ) We're all parents of CSHCN and offer free help for families of children with special healthcare needs (CSHCN), and they can call us (don't need to go to the office), including transition to adult care.  Usually we get questions on accessing SSI/Medicaid, insurance denials, finding information on a new diagnosis, etc.  We have a particular interest in outreaching to underserved families, cultural competency, addressing health literacy, and eliminating health disparities.  You can find your state Family Voices (FV) at http://www.familyvoices.org/states. In addition, there are Family-to-Family Health Information Centers (F2FHIC) in every state found at http://www.familyvoices.org/page?id=0052.  Many FV/F2FHICs are co-located in states.  I'm not sure about other states, but in NJ we go up to age 26 and are bilingual (Spanish.)  If anyone has any questions, feel free to contact me off list at familyvoicesnj@aol.com.  (P.S.  NJ office will be closed starting 12/24 and back 1/5.)

Lauren Agoratus

Hi Lauren,

Thank you so much for writing in and making yourself available for questions! It is so daunting to have challenges with literacy or English, and also daunting to take care of children with special health care needs. Those who face both these challenges can use all the help they can get! So it is really nice to be able to call an organization like Family Voices and have someone walk you through the maze.

Keep up the great work!

Julie

Hi Lauren,

I really appreciated your detailed response.  What jumped out at me was your mention of "Transition to Adult Care,"   This transition aspect is one of the most important challenges that children with disabilities/special needs face in their lives.  Can you give us an example of the help you might offer a family or consumer in this case?

Thanks very much,

Rochelle Kenyon, SME