Durable Med Equip (DME) Stories, Innovative Care Coordination, & A Caregiver Survey

This newsletter was sent February 14, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Note: The next Family Voices of California newsletter will be published on March 14 due to our annual Health Summit & Legislative Dayfollow along on Facebook and Twitter!

Have you ever had issues (length of wait, cost, etc.) accessing durable medical equipment (wheelchairs, walkers, lifts, etc.) for your child with special health care needs? The Department of Health Care Services (DHCS) has asked Family Voices of California to collect family input to help inform the California Children’s Services redesign team. We encourage you to take our survey and share your experience. To access the survey, click here.

All responses submitted by February 17 will be sent to the DHCS, but we welcome input past this date as it will be used in future advocacy efforts.

Calling All Youth With Disabilities 13-24 Years Old: Join Our Health Summit Youth Track!

We’re excited to be hosting our very first youth session at the Health Summit & Legislative Day in partnership with Youth Organizing! Disabled & Proud (YO!). Our youth track will address pediatric to adult care transition topics and will allow attendees to network with their peers and also learn from adults. To register, click here (flyer here). Date: Feb. 27


Superintendent’s Report: Cutting Medicaid: A Prescription To Hurt The Neediest Kids

The School Superintendents Association (AASA) released a report last month after surveying states to assess the school-based impact potential Medicaid per-capita caps and block grants could have on children. They received close to 1,000 responses across 42 states from superintendents, school officials, special education directors, and agency leaders. The top two responses reflected deep concern over special educationspecifically, how districts would maintain the program in a block grant situation, and also how students in poverty would be impacted if Early And Periodic Screening, Diagnostic, And Treatment (ESPDT) services were no longer reimbursable. The AASA strongly urges Congress to reach out to school leaders for informed insight. To read the report, click here, and to read an article from the Washington Post discussing findings, click here.

Related: February 21 Medicaid And Public Schools webinar 

Related: Kaiser Family Foundation Brief: Medicaid And Children With Special Health Care Needs and 5 Key Questions: Medicaid Block Grants & Per Capita Caps

Report: Innovative Approaches In Care Coordination And Care Delivery For Children With Special Health Care Needs Among Safety Net Health Plans

The Association For Community Affiliated Health Plans examined 12 of its member plans nationwide (two in California: Health Plan of San Mateo and Inland Empire Health Plan) in an effort to highlight innovative models of care coordination for children with special health care needs. The report also provides a narrative about the range of plan efforts to improve outcomes, access to health care services, and other needed supports. To read the report, click here.

New Interactive Title V, Medicaid, And CHIP Worksheets From The Catalyst Center

The Catalyst Center has created new interactive worksheets for Title V program staff, family leaders, and other stakeholders. The worksheets provide an overview of Title V, Medicaid, and the Children’s Health Insurance Program (CHIP). Each worksheet includes resources you can use to find and insert state-specific information to help demonstrate the importance of Title V, Medicaid and CHIP for children with special health care needs. They were created as companion materials to the Catalyst Center’s Public Insurance Programs and Children with Special Health Care Needs: A Tutorial on the Basics of Medicaid and the CHIP. To view the worksheets, click here.


Share Your Health Care Transition Challenges With The Hydrocephalus Association 

The Hydrocephalus Association will host a two-day workshop this month that will examine ways to improve the transition from pediatric to adult care for patients with hydrochephalus. The workshop will lead to a white paper that will propose a national plan of action and a set of measurable goals that can be reached within 5 to 10 years. To help further inform their research, the Hydrocephalus Association is encouraging those who have faced challenges transitioning (finding support in college, health insurance issues, locating a new neurologist, etc), to share their stories by emailing Jennifer at jennifer@hydroassoc.org. For more information, click here

Survey Of Caregivers For People With Disabilities: Family, Individual Needs For Support

The Arc is conducting a survey of caregivers for people with disabilities regarding their needs and the needs of their family members. The goal is to learn more about the experience of these caregivers. This survey was last conducted in 2010, and responses were compiled into a report which can be found here. To take the survey, click here.

Research Organization WestEd Seeks Feedback On Educational, Assistive Technology

The educational research organization WestEd is looking for parents of students with special needs (K-3rd grade) to participate in a research initiative. They’re looking to learn more about the use of educational and assistive technology and help further its development in partnership with Twin Cities PBS. Participation consists of a one-hour phone interview and parents will be given a $50 VISA gift card for their time. If you’re interested, email Laura at lgluck@wested.org or call her at (650) 381-6442 (please identify your child’s age and grade level in your message).


February 16: Patient Advisory Councils From Scratch: Putting Together Nuts And Bolts

Sponsor: The Center For Care Innovations

More information and registration here.

February 17: Life Disabilities Found In Individuals With Prenatal Alcohol Exposure

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

February 21: CDC Public Health Grand Rounds: Overcoming Barriers To Medication Adherence For Chronic Diseases

Sponsor: Centers For Disease Control And Prevention

More information and registration here.

February 21: Medicaid And Public Schools

Sponsor: Learning First Alliance

More information and registration here.

February 21: The Evaluation Process

Sponsor: Family Network On Disabilities

More information and registration here

February 22: Race, Equity, And Ethics: Questions On Child Welfare And Predictive Analytics

Sponsor: Alliance For Racial Equity In Child Welfare

More information and registration here.

February 22: Creating Systems For Individuals With Co-Occurring Mental Illness And Intellectual Disabilities

Sponsor: Substance Abuse And Mental Health Services Administration (SAMHSA)

More information and registration here.

February 23: Housing For People With Intellectual And Developmental Disabilities

Sponsor: UCS University Center For Excellence In Developmental Disabilities (UCEDD)

More information and registration here.


Complex Child February Edition: Annual Feeding Tube & GI Issue

Children’s National Announces The Creation Of First-Of-Its-Kind Rare Disease Institute

I Don’t Speak For Laura

With Talk Of Medicaid Changes, Waiver Services May Be At Risk

Raising Awareness Of Congenital Heart Defects

Medicaid Changes Should Include Care For Special Needs Children

Trump Education Nominee Confirmed In Spite Of IDEA Concerns

Aging Out Of Pediatric Care: A Cautionary Tale

Depression Strikes Today’s Teen Girls Especially Hard

Fresno Unified Oks Six Student Health Centers – But Staffing A Concern

This Foster Father Takes In Only Terminally Ill Children

Like Us!
Follow Us!
Email Us!