Betty Morse of the Vermont Department of Health, who serves both on the Board of NERGG and on the Health Care Access & Financing workgroup of the New England Genetics Collaborative, has asked us to post the following invitation from Dr. Peter Antal, inviting families to share their experiences to help improve policy makers’ understanding of the challenges that these families face around insurance coverage. 

Those who participate prior to October 31, 2015, will be eligible to win a $50 Target gift card.  Feel free to contact Betty for more information at 1-802-863-5924.

Dear Friends and Colleagues,

The New England Genetics Collaborative (NEGC) is seeking to improve the public and key decision makers’ understanding of the implications of current health care policy for individuals living with genetic conditions. Part of this process incorporates an effort to collect feedback from New England families concerning the quality of interactions with insurance providers, the kinds of services that have and have not been covered by insurance providers, and the ability to access effective care for children living with a genetic condition.

The information collected via this effort will be integrated into a policy brief and related educational material that can be used to educate legislators, insurance providers, and the general public concerning some of the challenges related to adequate health insurance faced by those living with genetic conditions. For our previous work in this area, please see our initial report on the ACA and its implications for families caring for children with genetic conditions at: http://www.negenetics.org/downloads/NEGCPolicyReport2014.pdf

Please support our process by encouraging your partners and networks in the New England region (VT, NH, ME, MA, RI, CT) to disseminate the message included below.

If you have any questions about this initiative, please contact Peter Antal at the NEGC (Peter.Antal@unh.edu).

Peter Antal, Ph.D.

Institute on Disability, UNH
603-617-2539

[EMAIL LETTER TO POTENTIAL FAMILY PARTICIPANTS]
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To families in the New England Region caring for children living with a genetic condition, an opportunity to...

Share Your Voice

A new initiative, led by the New England Genetics Collaborative (www.negenetics.org), is seeking to improve policy makers’ understanding about the multiple met and unmet health insurance needs of individuals living with a genetic condition. In order to be successful, we need family members to share their voice via a brief anonymous on-line survey on health insurance coverage for your child living with a genetic condition.

Why Your Voice is Needed Now

The federal health care law continues to evolve and policies are being updated. Not enough attention has been given to the group of people with high health needs. As a group they continue to struggle obtaining healthcare they need and affording the cost.  We want to help decision-makers understand some of the challenges experienced by families caring for children with genetic conditions.  We also want to bring awareness that these challenges can have an effect on the well being of children across the New England region.

No one knows better what children need than their parents.  That’s why we’re asking for your help in filling out this short survey.

Please take 15-20 minutes of your time to complete the survey for your state as follows:

CT: https://unh.az1.qualtrics.com/SE/?SID=SV_51fMAljJbo8zkup
MA: https://unh.az1.qualtrics.com/SE/?SID=SV_eR8xllRcJ1zl4DH
ME: https://unh.az1.qualtrics.com/SE/?SID=SV_0IJNU1Jlub9Kg9D
NH: https://unh.az1.qualtrics.com/SE/?SID=SV_eK7VS1YA1Xk1A2N
RI: https://unh.az1.qualtrics.com/SE/?SID=SV_ebRWJkhAd5qETyZ
VT: https://unh.az1.qualtrics.com/SE/?SID=SV_bvC7dCxyMPT7m8R 

Participants who complete the survey by 10/31/15 will be entered into random drawing for one $50 Target gift card. The gift card drawing will take place on 11/30/15.

If you'd like to see the results of our previous work in helping decision makers better understand the implications of the ACA for families caring for children with genetic conditions, please review our policy report at: http://www.negenetics.org/downloads/NEGCPolicyReport2014.pdf

If you have any questions about this survey, please contact Peter Antal, Ph.D. (Email: Peter.Antal@unh.edu or Phone: 603-617-2539) at the New England Genetics Collaborative at the Institute on Disability, University of New Hampshire.