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The Special Hope Foundation will be premiering two short films, “Supported Decision Making: Gabby’s Story” and “Bridging the Gap: Improving Healthcare Access for People With Disabilities,” on March 18th via OVEE, an online streaming platform. Online registration is required in advance.

The Special Hope Foundation aims to promote the establishment of comprehensive healthcare services for adults with developmental disabilities designed to address their unique and fundamental needs. Their two short films were developed following a conference they held last fall and highlight a theme that emerged as a result of their engaged stakeholder conversations. It is their hope that the films will not only provide deeper understanding of these complex healthcare access issues, but that they will promote greater awareness to healthcare provides, advocates, and policymakers.

FILM DESCRIPTIONS

SUPPORTED DECISION MAKING: GABBY’S STORY

Supported decision making is an emerging strategy to enable individuals to make their own choices. This is especially helpful in the healthcare setting where every person utilizes the expertise of their provider and other resources to make difficult health-related decisions. This film uses Gabby’s story to illustrate the benefits of the strategy, both in the decision making process and as a way to maintain personal autonomy.

BRIDGING THE GAP: IMPROVING HEALTHCARE ACCESS FOR PEOPLE WITH DISABILITIES

Too often, healthcare providers do not receive adequate training to practice culturally sensitive care towards those with disabilities. This creates a barrier to primary and emergency medicine. This film highlights Melissa and her stories of both frustration and victory, working with practitioners to break down assumptions.

The Senate Select Committee on Children with Special Needs was recently formed with the goal of identifying ways to strengthen and integrate the services that benefit children, youth, and their families. Chaired by Senator Richard Pan, the committee aims to break down the various silos of care and make it easier for those with developmental and behavioral disabilities to access crucial support systems. The committee held its first hearing on December 1, 2015, and a summary report of their findings can be found here. In addition, they also released an issue brief that maps care systems in California.

FVCA advocates Wendy & Derek Longwell spoke at a press conference in February announcing the formation of the Select Committee. Check out a video recap of the day below!

Families of children and youth with special health care needs (CYSHCN) have had significant real-world experiences that could help make health care policies and administration more family-centered and culturally competent. However, many lack the training and experience to make their voices heard. Family Voices of California’s (FVCA) Project Leadership was designed to increase the capacity of families to partner in the development and oversight of services, systems and programs upon which they and their children depend. Project Leadership features a comprehensive training curriculum, paired with mentoring and support, that prepares families to build partnerships with professionals and engage in public policy advocacy on behalf of CYSHCN. An independent evaluation found that program graduates from diverse backgrounds showed significant improvement in leadership skills and confidence in their ability to advocate. In the project’s first two years, 79 family members of CYSHCN completed the training and began active participation on a variety of committees and planning bodies; they gave testimony at state and local hearings and had their stories featured in the media.

Project Leadership: Effecting Change, One Parent at at Time [pdf]

by David Gorn

The state Senate Committee on Health this week approved a bill to delay the move to managed care for California Children’s Services, a program for Medi-Cal children with rare and complicated diseases.

AB 187, by Assembly member Rob Bonta (D-Oakland), would put off the state’s planned shift of children in the CCS program for a year, till January 2017.

“As you know, CCS is a vital program that our most medically vulnerable children with diseases such as hemophilia, congenital heart disease and cerebral palsy,” Bonta said. “The current CCS program is expiring in January 2016, this bill extends the CCS carve-out for one year.”

Erin Kelly, executive director of the Children’s Specialty Care Coalition, said the plan released in June by the Department of Health Care Services to move roughly one-third of CCS children in 19 counties by July 2017 into managed care is too ambitious and could harm the fragile, high-needs population in the program.

“The timeline is rapid,” Kelly said. “The coalition, along with other stakeholders, have significant concerns about the department’s proposal in its current form, and feel the department’s rush to pass this proposal during this legislative session could potentially have unintended consequences to the health and well-being of children enrolled.”

Pip Marks, manager of Family Voices of California, a statewide collaborative of parent-run children’s centers, based in San Francisco, said DHCS has done a good job involving stakeholders, and she particularly likes the new “whole child” approach the state is taking.

“Our primary concern is access to care. One of the most important components of CCS is that our children … have timely access to specialty care,” Marks said.

“Children with very special health care needs … must be seen and cared for by providers and facilities who understand their unique conditions.”

The big concern of going to Medi-Cal managed care, Marks said, is that the networks wouldn’t include some of the needed subspecialty providers and therapists for rare and specialized diseases.

“Commercial managed care health plans have a reputation of inadequate provider networks,” Marks said. “There is a concern that children with serious CCS medical conditions may not get the access to the appropriate services.”

Committee Chair Sen. Ed Hernandez (D-West Covina) said he’s not too concerned about passage of the CCS extension by the Legislature — but that doesn’t mean the bill would become law, he said.

“My concern is potentially getting a veto of the extension,” Hernandez said.

“I think it’s important that the Legislature be part of that conversation, along with the stakeholders,” he said. “What I don’t want to see is us to go down the road we did with Healthy Families, that we did with the duals, that we’ve done with Medi-Cal. I want to make sure this segment of the population is protected.”

The health committee approved the bill 8-0. It now heads to the state Senate Committee on Appropriations.

http://www.californiahealthline.org/capitol-desk/2015/7/childrens-services-may-get-extra-year-before-move-to-managed-care-starts