Reflections: ‘Disability Community Advocacy Made The Biggest Difference’

After a series of failed attempts to pass health care legislation aiming to dismantle the Affordable Care Act, Senate Republicans tried for a last-ditch effort entitled the Health Care Freedom Act, or ‘skinny repeal,’ on July 28. The bill was defeated 49-51. For an explanation of what the skinny repeal would have done, click here, and to read Family Voices’ statement on the outcome, click hereThis success wouldn’t have been possible without the tireless advocacy of so many who wrote, called, and visited to let Senators know why any bill involving Medi-Cal cuts would be detrimental to children and youth with special health care needs who depend on the program.  

Alison Barkoff, Director of Advocacy at the Center For Public Representation, reflects on the power of the disability community in light of the recent defeat of the skinny repeal. 


With a few hours of sleep after last night’s vote, the significance of our advocacy is just starting to sink in. We stopped what was believed to be inevitable. That alone is amazing. Reflecting on the experience, we’ve also done so much more.

We have shown that advocacy works.

People with disabilities, their families, and allies made their voices heard. We told our stories, met with members of Congress, called, wrote, rallied and protested. We put a face on the harmful impacts of the bill. And as everyone on the Hill has told us, it was the advocacy of the disability community that made the biggest difference.

Alison Barkoff, Director of Advocacy at the Center For Public Representation

We have shown that the disability community is a force to be reckoned with.

The disability community didn’t just show up — we led the fight. With ADAPT putting their bodies on the line again and again, the Little Lobbyists going from office to office to literally show whose futures would be capped, and the Arc collecting over one thousand stories in a single weekend — the leadership in the disability community has been amazing.

We have invigorated our disability rights movement and built strong cross-disability coalitions. 

We all came together. So many people — both at the national and state level — said that groups that don’t usually collaborate were working together. We blew up the usual silos and we now have some very strong cross-disability coalitions at the national and state levels we can build off for our next fight and to push our affirmative agenda.

We have educated members of Congress and the public about Medicaid and disability rights.

Just a few months ago, we would go to Hill meetings and staffers didn’t know much about Medicaid, let alone what it meant to people with disabilities. We couldn’t get any attention on the Medicaid cuts and caps that put the lives and liberty of people with disabilities at risk. Now, this has changed. Cuts and caps to Medicaid became the wedge issue in the health care fight. Members of Congress and the public now have a fuller understanding that Medicaid helps adults and children with disabilities live in the community, be part of a family, go to school and have a job. We still have more work to do, but we are so much better positioned for our future fight to protect Medicaid.

We have built relationships with broad grassroots groups.

We have worked together with grassroots groups like MoveOn, Indivisible, FamiliesUSA, and so many others. There is much more for us to do to educate and get them to support the disability agenda, but there are some really great relationships to work from.

We have seen several members of Congress emerge as major disability rights champions.

A number of members of Congress have truly stepped up as champions of disability rights. In particular, Senators Casey, Hassan, Van Hollen and Duckworth have put disability rights front and center in the health care fight (they’re also co-sponsors of the Disability Integration Act). These champions will be important not only as we work to fight against harmful bills, but as we try to move forward the disability rights agenda.

In short, I am truly in awe of our community.  Thank you for the tireless advocacy by each of you to get us to this point.

Alison & Family Head To DC, CCS/WCM Survey, & A Mental Health Parity Webinar

This newsletter was sent July 18, 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.

Reminder: use our resources to tell legislators why Medi-Cal is critical for children and youth with special health care needs and urge them to preserve Medicaid. Also see: updated crosswalk of bill provisionssummary of findings, and implementation timeline (all via NASHP).

Project Leadership graduate Alison Beier and family were invited to attend Speak Now for Kids’ Family Advocacy Day on behalf of UCLA Mattel Children’s Hospital July 12-13. Each year, families from children’s hospitals across the country travel to Washington, D.C. to meet with their legislators and discuss pressing health care issues. Seven-year-old Evan Beier was born with multiple congenital anomalies, and he and his mom stressed the importance of Medicaid funding, mental health access, In-Home Supportive Services, and more.

To read Alison’s full recap and learn how the Project Leadership program helped shape her focus, click here.

Parent Survey: Rollover Of Select Kids In California Children’s Services Into Medi-Cal Managed Care Plans: How Can We Help You?

If your child receives California Children’s Services (CCS) in one of these 21 counties, Family Voices Of California invites you to share your questions, concerns, and let us know  how we might assist you in the coming year.

No sooner than July 1, 2018, The Department of Health Care Services (DHCS) will begin transitioning kids currently enrolled in CCS in the above 21 counties into Medi-Cal managed care plans.

By implementing this new Whole Child Model, the DHCS hopes to integrate health care for children and youth with special health care needs. To take the survey, click here. For more information about the Whole Child Model click here, and for county-specific phase-in information click here.

RESOURCES

CDC Releases 2016 Chartbook On Long-Term Health Trends

The Centers For Disease Control And Prevention (CDC) has released their 40th annual health trends report that presents an overview of national trends in health statistics. It also contains 141 trend tables organized around four major subject areas: health status and determinants, health care utilization, health care resources, and health care expenditures. To read the report, click here.

New Learning Module: Communicating The Importance Of Developmental Screening

The Association Of Maternal & Child Health Programs (AMCHP) has released a new learning module on the value of developmental screening. It includes four steps to promote early identification, speaker perspectives, and various resources. To view the module, click here.

 OPPORTUNITY FOR INPUT

Public Comment Period For Healthy People 2030 Framework Now Open

Healthy People provides 10-year, science-based national objectives for improving health that reflect input from a diverse group of individuals and organizations. The team is requesting comments on the proposed framework for Healthy People 2030, which refers to its vision, mission, foundational principles, plan of action, and overarching goals. For more information, click here.

Women With Epilepsy Conference To Take Place Saturday In Castro Valley

The Epilepsy Foundation Of Northern California will host its first-ever Bay Area conference this Saturday from 9 a.m – 2 p.m. The ‘Living With Epilepsy’ event is open to all women with epilepsy as well as caregivers, friends, and the public. Cost is $25 per adult, $10 per child (4-12). For more information, click here

WEBINARS

Mental Health Parity: Assuring Equal Access To Treatment For Children And Youth In California 

Family Voices Of California will host a webinar on August 16 detailing the necessary strategies to overcome insurance company discrimination. Attendees will learn about federal and state mental health parity laws and how to appeal the denial of insurance coverage. To register and learn more, click here.

July 20: Supporting Title V And Medicaid Collaboration In Pediatric Medical Home Implementation

Hosted by: National Center For Medical Home ImplementationNational Academy For State Health Policy, and The Catalyst Center

More information and registration here.

July 20: The Many Faces Of Advocacy

Hosted by: Hemophilia Council Of California

More information and registration here

July 20: Allergies And Sublingual Immunotherapy (SILT)

Hosted by: Allergy & Asthma Network and American College Of Allergy Asthma, & Immunology

More information and registration here.

July 26: Medicaid Undone: Covering The Safety Net’s New Future

Hosted by: The Center For Health Journalism

More information and registration here.

July 29: Reducing Risk And Abuse Prevention

Hosted by: Parents Helping Parents

More information and registration here.

August 2: Effects Of Propranolol On Functional Connectivity In Autism

Hosted by: Autism Research Institute

More information and registration here.

August 9: Normal Pressure Hydrocephalus: Treatments And Current Research

Hosted by: Hydrocephalus Association

More information and registration here.

Archived Webinar: Measuring Family Experience Of Care Delivery Integration To Improve Care Delivery

ARTICLES

Little Lobbyists: Stories Of Kids With Complex Medical Needs On Capitol Hill

Families Take Risky Road Trip To Save Their Health Care

Potential Impact Of Health Bill On Home And Community-Based Services Spending 

California Health Care Foundation’s July Newsletter On Medi-Cal/Senate Health Care Bill 

Autism Still Gets Dismissed By Some Doctors, Family Learns In Yearlong Challenge

Increasing The Number Of Doctors With Disabilities Would Improve Medical Care

Doctors With Disabilities: Why They’re Important

Proposed Medicaid Rules Offer Rural Residents Less Access To Specialty Care

Parents Of Ill Children Worry About Return Of ‘Lifetime Limits’ In GOP Health Bill

Medi-Cal Patients Sue State, Claiming Widespread Discrimination 

On Point Radio Audio Recording: Children With Disabilities And The Senate Health Plan

Effort To Shield Disabled From Medicaid Changes Would Leave Many Kids On The Outside

‘Carve-Out’ In Senate Republican Health Care Bill Fails To Protect Children

This Boy’s Care Cost Up To $15,000 A Month. Will The GOP’s Health Plan Cover It? 

Kids In Pro-Trump Rural Areas Have A Lot To Lose If GOP Rolls Back Medicaid

For Many, Medicaid Provides The Only Route To Mental Health Care

Why Americans With Disabilities Fear Medicaid Cuts

 

Down Syndrome Conference Recordings, Cochlear Implants, & Autism Survey

This newsletter was sent July 5, 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.

Save Medi-Cal: Contact Your Senators NOW! 

If the proposed Senate bill to repeal and replace the Affordable Care Act passes, more than 5 million California children would be at risk of losing their health coverage. This legislation would drastically restructure California’s Medi-Cal program in a way that would hit children and youth with special health care needs especially hard.

Although the Senate did not vote on the Better Care Reconciliation Act before the holiday recess, they are prepared to return to the bill upon reconvening July 10. Contacting your Senators to explain why Medi-Cal is critical (and encouraging friends in key states to do the same) is invaluable during this crunch time.

For email templates, phone scripts, social media tools, and other advocacy resources click here.

Family Voices Statement On Senate Health Care Bill

Senate Republican Statements On Health Care Bill

CBO: Senate Bill Cuts Medicaid By More Than One-Third By 2036

Roundup: Analyzing The Senate GOP Health Bill

Little-Noticed Medicaid Changes In Senate Health Plan

Disability Advocates Push Back On Health Bill As Vote Looms

For Millions, Life Without Medicaid Services Is No Option

Parents Of Sick Kids Try To Remind Congress What The Health Care Debate Should Be About

RESOURCES

Study: Use Of Sign Language After Cochlear Implant May Slow  Verbal Development

A new study from the American Academy Of Pediatrics used nationwide data to document verbal skills in children with cochlear implants who received different amounts of early sign language exposure. Researchers found 70 percent of children not exposed to sign achieved spoken language similar to their peers with normal hearing, compared to 39 percent of those who were exposed to sign for 3+ years. To read the study, click here.

Related: two new websites for parents of children who are deaf or hard of hearing launched earlier this year. Hear To Learn offers downloadable activities that focus on language, literacy, math, and music. SignIt is a basic online American Sign Language course that’s free for parents of young children who are deaf or hard of hearing. The self-paced curriculum  is ten units and is estimated to take 25-30 hours to complete. 

Session Recordings Now Available From UCEDD Life With Down Syndrome Conference

The University Center For Excellence In Developmental Disabilities hosted their Life With Down Syndrome: Fulfillment, Health, Education, Advocacy, And Inclusion conference in May and have made all session recordings and accompanying handouts available. The 13 presentations cover topics such as genetics and research development, oral placement therapy, teaching reading and writing, dating, conservatorship, and more. To browse the presentations, click here

Brief: Increasing The Physical Accessibility Of Health Care Facilities 

A new issue brief from the Centers For Medicare And Medicaid Services discusses examples of federal and state-level efforts to increase the accessibility of health care facilities and offers suggestions for improvement. The information suggests that structural obstacles, inaccessible equipment, and restrictive polices and procedures contribute to the widespread health care disparities experienced by people with disabilities. To read the brief, click here

OPPORTUNITY FOR INPUT

Surveys: Emotions Surrounding Diagnosis Of Autism Spectrum Disorder, Improvements For School-Based Services

Researchers at the University Of South Dakota are conducting surveys on behalf of the South Dakota Leadership Education In Neurodevelopmental And Related Disabilities (SD LEND) program. The first survey seeks to understand the wide range of emotions parents experience when their child is first diagnosed with autism. Five random participants will win five $20 Amazon gift cards. The second survey contains questions about school-based services for children with autism and what could be improved. 

Registration Open For Inland Valley Deaf And Hard Of Hearing Family Camp August 11-13

California Hands & Voices is hosting their second annual family camp August 11-13 at Prado Regional Park in Chino. Parents will have the opportunity to attend workshops and discuss concerns related to raising kids with hearing loss while their children participate in a variety of planned activities and campfire events. Weekend cost: $75 (adult), $55 (child). Individual day rates also available. To register, click here.

WEBINARS

Archived Webinar: Coming Of Age In Autism: The Transition To Adulthood

July 6: Preparing For 2018: Overview Of Changes In The Marketplace

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 7: Changes To Special Enrollment Periods (SEPs) And Pre-Enrollment SEP Verification

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 11: Promoting Patient Resilience In Clinical Practice: An Introduction To the Strengthening Families Protective Factors Framework

Hosted by: Connecticut Children’s Medical Center and American Academy Of Pediatrics

More information and registration here.

July 19: Help Prevent Accessible Parking Abuse

Hosted by: United Spinal Association

More information and registration here.

July 25: How Technology Is Empowering Hydrocephalus Patients

Hosted by: Hydrocephalus Association

More information and registration here.

July 25: Focused Ultrasound And Potential New Technologies For Difficult To Control Seizures

Hosted by: Epilepsy Foundation

More information and registration here.

July 27: Expert Series On Addressing Infant Mortality

Hosted by: National Institute For Children’s Health Quality

More information and registration here.

July 27: Feeding Q&A: Beyond The Basics

Hosted by: The Johnson Center For Child Health And Development

More information and registration here.

August 16: Mental Health Parity: Assuring Equal Access To Treatment For Children And Youth In California

Hosted by: Family Voices Of California

More information and registration here.

ARTICLES

Complex Child July Edition: Rare And Interesting Conditions

Survivors Of Childhood Diseases Struggle To Find Care As Adults

In California, 14 Million Reasons to Wonder – And Worry – About GOP Health Care Bill

Their Children Are Dying. So These Families Are Racing To Raise Money for Research No One Else Will Fund

Hoop Dreams: Wheelchair Basketball Is Changing Lives In Afghanistan

Disability Services Threatened Under Proposed Cuts To Medicaid

Stories About Disability Don’t Have To Be Sad

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