Family voices need to be heard at all levels to make changes in systems. Though not all families will be the voice at the policymaking level all families care deeply about their children and want to make sure their children get what they need. Leadership development is ongoing and specific to each family’s strengths and as families grow in their knowledge they will often have a desire to share what they have learned. The project will help families become strong advocates for their own children, assist others in advocating and providing valuable input as decisions are being made that effect CYSHCN. This help will ensure that families now and in the future can cut the red tape to meeting their children’s health care needs.
Activities/Methodology: Parents Reaching Out will provide at least 12 culturally and linguistically competent educational opportunities per year, six of which will be in rural areas on topics such as Record Keeping, Medicaid, SSI, Early and Periodic Screening, Transition, Waivers, and Parent to Parent. At least 3 will be in Spanish. Staff will be available to provide one-to-one interactions with families through toll free phone line, emails, and meetings. We will create and disseminate materials on Medicaid, social security, waivers, and the Affordable Care Act as it becomes available, at local conferences, health fairs, and public health offices. Parents Reaching Out will utilize social media and send out e-blasts to list serve members with information on upcoming public meetings and changes to health care services. We will assist families to frame their experiences and family story to impact systems that affect CSHCN. Families will have opportunities share their experiences of raising a CSHCN with medical and occupational therapy students through our Families as Faculty Program. We will host educational opportunity once a year on workshop entitled “Community Based Advocacy” to help families understand how to impact policy. Parents Reaching Out in Collaboration with EPICS will host an Annual Family Leadership Conference to promote strategies on how to impact the many levels of policy and decision making.
Blue Cross/Blue Shield Partnership
We participate on a variety of committees and have developed numerous partnerships across the state. We are particularly proud of a collaboration with Blue Cross and Blue Shield of NM to educate families on Centennial Care, Affordable Care Act, and Medical Homes. In 2013 we hosted mini conferences in Gallup and Albuquerque. In collaboration with our partners, we provided high quality training, materials, and resources to the many families who participated. Following these conferences, focus groups met to discuss the usefulness of the conference, follow-up issues, and impact on participants. As a result of the conference, 100% of family participants felt that they could make more informed decisions about their family’s health care. Due to the success of the conferences, we have received additional funding to hold mini conferences in Taos and Roswell in 2014.
Resources are shared by the F2FHICs to help families, other family leaders and partners. While you are welcome to adapt any of the materials for your organization, we ask that you include an acknowledgement of the author/source in your adaptations and that you let the original author know of your use of the materials. Copyrighted materials may not be reproduced or adapted without the express permission of the author.
A tip sheet on helping youth communicate with providers
A tip sheet on How to Advocate for Yourself in the Healthcare Benefits System
A tip sheet on Transition Health Care - What Families Need to Know
A tip sheet on Mi Via Self-Directed Waiver
A 1-pager of frequently asked questions about EPSDT
Sabemos, por nuestra experiencia, que no es fÃ¡cil navegar por el sistema de pensiÃ³n por seguro suplemental o (SSI). Esperamos que Ã©sta guÃa le conteste algunas preguntas bÃ¡sicas pero importantes como lo son: Â¿QuiÃ©n es elegible? Â¿CÃ³mo se solicita? Â¿Es complicado? Â¿DÃ³nde se consigue ayuda? Â¿Existe un proceso de apelaciÃ³n?
Este libro le trae informaciÃ³n adjunta y consejo a las familias, defensores, manejadores de casos y agencias para proveer un â€œmapa del caminoâ€ para familias e individuos.
A 24-page guidebook on how to apply for SSI and what to do if you are denied.
"El segundo libro, â€œEl Manual de asignaciÃ³nâ€ que lo lleva a travÃ©s de los pasos para comenzar los servicios del DD Waiver despuÃ©s de que usted recibe el aviso de un espacio de fondos disponibles en el DD Waiver.
Side by side comparison of the Home and Community Based Waivers offered in New Mexico
A 72-page guidebook that provides an explanation of the application process for the DD Waiver and information on the services available under this waiver.
A 72-page guidebook for families and individuals with disabilities on accessing services after an â€œallocationâ€ to the DD Waiver has been received.
A 34-slide presentation on the SSI program and kinds of waivers available in New Mexico.
An overview of PRO, home to the F2F HIC in NM and other projects
A 34-slide presentation on the Medicaid and EPSDT programs in New Mexico
A 31-slide presentation to help families and youth prepare for transition to adult care. Includes such topics as guardianship, SSI, Independent Living Centers, Vocational Rehab, etc.