This newsletter was sent January 17, 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: Our 15th Annual Health Summit & Legislative Day will take place Feb. 27-28, 2017. More information and registration here. Free for families.

Marin Mom Collaborates With Local Hospital To Spearhead “Ouchless” ER Project

During an intense bout of croup, 3-year-old Aiden Taylor passed out at home and was rushed by ambulance to Marin General Hospital with his mother, Cathy — his father, Michael, followed by car. Although Aiden recovered from the infection, the calloused emotional treatment the Taylors experienced in the emergency room in early 2015 spurred Cathy’s commitment to transform Marin General’s pediatric emergency department to “Ouchless” — a holistic philosophy of care that not only addresses children’s physical needs, but also their (and their parents’) emotional needs.

Read Cathy’s story here.

NEWS

Whole Child Model Implementation Date Delayed: Transition To Begin July 1, 2018

The Whole Child Model, or the state’s plan to streamline care by transitioning thousands of medically complex children currently enrolled in California Children’s Services to Medi-Cal managed care plans, has been pushed back one year. Previously, the Department Of Health Care Services had planned to start transitioning children in certain counties beginning July 1, 2017. On Jan. 10, Governor Brown introduced the 2017-18 budget, which detailed select initiatives that would be delayed—the Whole Child Model being one of them (refer to page six of the Budget Highlights here). The Governor also signed SB 586 into law on Sept. 25, a bill which ensures children with special needs will be protected during the Whole Child Model transition. The extended implementation timeline may come as a relief for many SB 586 advocates.

RESOURCES

Program Sessions From Autism Society San Francisco’s Conference Now Available

At the end of last year, the Autism Society Of San Francisco held a conference titled “Into The Future: An Adult Autism/Developmental Disabilities Planning Workshop.” They’ve now made recordings and slides from all program sessions available online. Topics include  accessing health care, writing transition plans, planning for care after a caregiver is gone, and more. To browse conference sessions, click here.

Study Evaluates Transition Experience Of Youth And Young Adults With Diabetes

Researchers surveyed 602 type 1 diabetes patients, ages 18 to 30, and discovered that 21% experienced a gap in care of at least six months while transitioning from pediatric to adult care. The study, published in Diabetes Care, emphasized the need for more intense efforts to integrate transition preparation counseling and care coordination within pediatric type 1 diabetes education. Although researchers found that over 90% of youth with type 1 diabetes (still in pediatric care) received some counseling on diabetes management and screening tests, most patients expressed that they wanted to stay with their pediatric provider because they felt attached. To read the executive summary, click here (full article requires payment).

50-State Survey Reflecting Key Medicaid And CHIP Information As Of January 2017

The Kaiser Family Foundation has compiled a statewide survey on eligibility, enrollment, renewal, and cost sharing polices in Medicaid and the Children’s Health Insurance Program (CHIP). This annual survey identifies changes in these polices that took place in the past year. Among other findings, the survey discovered that Medicaid and CHIP are the central sources of health coverage for low-income children and pregnant women, with 49 states covering children and 34 states covering pregnant woman with incomes at or above 200% federal poverty level. To view the report, click here. 

OPPORTUNITY FOR INPUT

Survey: Help Identify Barriers To Medi-Cal Enrollment For Former Foster Youth

Young adults who were in foster care at 18 or older qualify for Medi-Cal coverage until the age of 26—regardless of income or immigration or status. Children Now is looking to learn about the community’s experience working to ensure these eligible former foster youth have Medi-Cal. Specifically, they would like help identifying barriers to enrollment or retention, supporting efforts to ensure coverage, and providing resources. To take the survey, click here.

WEBINARS

Upcoming Webinar Series: Disability-Competent Care (Feb. 8 to March 22)

Sponsor: Resources For Integrated Care

Topics: long-term services and supports, care coordination, behavioral health, and more. More information and registration here.

January 19: Tourette Syndrome And ADHD: Starting A New Year With Health, School, And Home Supports

Sponsors: National Resource Center On ADHD and Tourette Association Of America

More information and registration here.

January 19: Understanding Depression In Teenagers

Sponsor: National Institute Of Mental Health

More information and registration here. 

January 19: IEP Series: Effective Parent-Teacher Conferences

Sponsor: Family Network On Disabilities

More information and registration here. 

January 23: Mental Health Research: What You Need To Know

Sponsor: National Institute Of Mental Health

More information and registration here.  

January 24: After Obamacare: The Future Of U.S. Health Care

Sponsor: Center For Health Journalism

More information and registration here.  

January 25: Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure

Sponsor: American Academy Of Pediatrics

More information and registration here. 

January 25: Inclusion Through Innovation

Sponsor: National Down Syndrome Society

More information and registration here.

January 26: Mental Health Services In Schools For Students With Intellectual / Developmental Disabilities

Sponsor: University Center For Excellence In Developmental Disabilities

More information and registration here.

February 1: Treatment Across The Lifespan For Persons With Fetal Alcohol Spectrum

Sponsor: American Academy Of Pediatrics

More information and registration here.

ARTICLES

Video: Kansas Parents Of Two Girls With Microcephaly Share Joys, Struggles Of Family Life

Related: Hartley Hooligans Blog (by the same family featured in the above article)

January Edition Of Complex Child Magazine: Emotions

Newborns Often Gen Unapproved Drugs. Now, A Push For Data

New Guidance Outlines Civil Rights Protections For Students With Disabilities

Telemedicine Helps Keep Kids In The Classroom

The Aging Of The Population With Down Syndrome Is A Positive Sign

Feed Your Kids Peanuts Early And Often, New Guidelines Urge

Nonprofits, Philanthropy, And Pediatric End-Of-Life Care—A Gap To Be Filled

Many U.S. Kids Live Far From Child Surgery Specialists

Health Claims On The Rise For Kids With Type 2 Diabetes, Obesity-Related Conditions

IEPs/504 Plans: Pediatrician Is Often First Stop For Families Navigating Educational Issues

With Too Few Nurses For Kids’ Home Care, Parents Push For Action

Gov. Brown’s Budget Shows Support For Medi-Cal

CVS Slashes Price Of Substitute EpiPen Auto-Injectors To $109.99

During an intense bout of croup, 3-year-old Aiden Taylor passed out at home and was rushed by ambulance to Marin General Hospital with his mother, Cathy — his father, Michael, followed by car. Although Aiden recovered from the infection, the calloused emotional treatment the Taylors experienced in the emergency room in early 2015 spurred Cathy’s commitment to transform Marin General’s pediatric emergency department to “Ouchless” — a holistic philosophy of care that not only addresses children’s physical needs, but also their (and their parents’) emotional needs.

“When I arrived at the ER, the nurse was very cold and explained the hospital was enforcing a one visitor per patient rule because of a high incidence of flu,” Cathy said. “Aiden was clinging to me, asking where his dad was, but wasn’t able to see him because the nurse made me choose between my husband or myself.”

Cathy, an ultrasound technician at the University Of California, San Francisco, also noticed further red flags that added to the chaos. When a young boy was brought in with both parents and Cathy pointed this out, a nurse began yelling at the boy’s family, who didn’t speak English, and told them one parent needed to leave immediately. Cathy observed that this exchange lacked the standard cultural sensitivity expected in hospitals, as no translator was offered.

The following day, Cathy filed a complaint with patient relations and the hospital modified their one visitor per patient rule within 24 hours. However, she was still angry and knew more needed to be done to improve how children, and families, were treated in the ER.

“It’s been long-standing knowledge that we don’t have good pediatric emergency care in Marin,” Cathy said. “We usually have to go over the Golden Gate Bridge to a children’s hospital. In an emergency, we can’t be dependent on this, especially because children make up 20% of Marin’s population.”

Over the next six months, Cathy’s anger shifted to productivity as she began diligently attending the Marin Healthcare District’s monthly board meetings, learning all she could about key players, and listening to what the community had in mind for Marin General’s future. She and Michael formed a business plan, and in June of 2016, Cathy pitched her Ouchless ER model to the hospital board. She used past Ouchless projects as examples, as well as results from a 2013 national pediatric readiness survey that showed that many community hospitals in California lack basic emergency tools — the average rating being a C-. To raise money for the project, Cathy proposed (and executed) a community matching fund. The entire Ouchless platform was well-received by the hospital administration.

“When I finally spoke up in the meeting, everyone was floored to find out that I was just a mom who was really angry, and I had an idea of how we could do better for our children,” Cathy said. “The administration loved the idea and immediately had me in the office the following day, and from there it plays out just like a Disney movie.”

An Ouchless Executive Committee was formed, and a $30,000 donation was secured from the Schultz Foundation (named after Andrea Schultz, who chairs the Marin General Foundation Board of Directors) as well as an additional $120,000 from the hospital itself. Staff from Benioff Children’s Hospital came to Marin General and trained the pediatric emergency department on new Ouchless-friendly equipment, different pain management techniques, and how to address the various developmental levels of children. The hospital began employing Ouchless techniques in November of 2016.

“The important part of this program is allowing children to feel like they have choices and that they’re in control,” said Michelle Tracy, director of emergency and trauma services at Marin General. “We also understand that you don’t just have one patient, but two or three, including parents.”

In the days before Ouchless, parents would observe while nurses worked, resulting in a very traumatic experience for all. Now, through training, staff has learned that you include parents as often as possible. For instance, children now sit on their parents’ laps while nurses draw blood, in rooms painted with bright, fun designs.

The new program also focuses on distraction techniques such as blowing bubbles, reading books, or playing with blocks when a procedure (such as a blood draw) is done. Dolls are used to explain what will happen, and shots are given through a J-tip “needle,” which is actually a syringe that works through air compression to numb the skin before a shot or IV is given. Pain and anxiety medication are administered through a fast-acting nasal mist, and for older children who aren’t too afraid of shots, a vibrating toy bee with an ice pack is placed on the arm to numb the injection site.

“We’re already starting to get a lot of thank you notes,” Michelle said. “When children leave the ER, they don’t look like they’ve been traumatized. They’re leaving with smiles on their faces and saying thank you to the staff.”

For Michelle, establishing this type of pediatric emergency program at Marin General has always been a goal — both for professional and personal reasons. Years ago, she and her then 4-year-old daughter were in a bad car accident in New York and transported to the hospital where Michelle was employed as a nurse. Similar to Cathy, Michelle experienced less-than-empathetic care in the emergency department. Staff assumed she was drinking (false) and, after 72 hours, casually told her she would need to look into home care options for her daughter, who survived but would be severely brain damaged and require months of rehabilitation.

When she finally went back to work in New York, she entered the pediatric emergency department and made sweeping changes to the program, spending her time advocating for patients and families and learning how to care for the caregiver. With all the West Coast focus on cardiac, trauma, and stroke care, Michelle was never able to fully focus on pediatrics until she connected with Cathy.

“Cathy and I immediately bonded, and she helped make pediatrics a forefront item when she came into the picture,” Michelle said. “I couldn’t have done it without her, and she couldn’t have done it without me.”

The Ouchless program has been well-received within Marin General, with requests from different departments for their own trainings. Tracy plans to hire a child life specialist, an individual who helps families deal with all aspects of hospitalization and illness, to work alongside children wherever they go in the hospital. She’s also formalizing an Ouchless training model that will be shown to all new hires, and that can be shared with other hospitals.

Cathy’s ongoing goal is to expand Ouchless to different hospitals by empowering parents to advocate for this powerful model of care within their local hospitals.

“If you want a solution, be a part of it, and if you’re angry about something, figure out what role you can play,” Cathy said.

This newsletter was sent January 3, 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: Our 15th Annual Health Summit & Legislative Day will take place Feb. 27-28, 2017. More information and registration here. Free for families.

NEWS

Proposed Bill Declares All Children In California Are Entitled To Basic Rights

Senator Richard Pan (D) introduced the Children’s Bill Of Rights (SB 18) at a news conference on Dec. 12, stating that all children and youth should have access to quality education, appropriate health care, and safe, supportive environments. The proposal, sponsored by Common Sense Kids Action, says the Legislator will work on establishing a framework that governs the rights of all children and youth. To read more, click here.

California State Senate Committee Chairs, Members Named For 2017-2018 Session

State Senate President Pro-Tem Kevin De Leon (D) made his selections for 2017-2018 committee chairs and members on Dec. 19. Known advocates for the disability community include Senator Holly Mitchell (D) as the new chair of the Senate Budget And Fiscal Review Committee, Senator Richard Pan (D) as the new chair of the Senate Budget Subcommittee #3 on Health And Human Services, Scott Wiener (D) as the new chair of the Senate Human Services Committee, and Senator Ed Hernandez (D) as the continuing chair of the Senate Health Committee. To read more about these appointments, click here for information from the California Disability Community Action Network.

RESOURCES

New Autism Transition Report Released From The Government Accountability Office

Titled “Youth With Autism: Roundtable Views Of Services Needed During The Transition Into Adulthood,” this report examines the types of services and supports transitioning youth with autism require to reach their adulthood goals. It also looks at the characteristics of these services and supports, and how youth with autism can be fully integrated into society. The report is the result of a roundtable discussion with adults with autism, parents of youth with autism, providers, and researchers. To read the report, click here.

Study Finds U.S. Families Provide 1.5 Billion Hours Of At-Home Care To Children With Chronic Medical Needs At Substantial Economic Cost

In a new American Academy Of Pediatrics study titled “Family-Provided Healthcare For Children With Special Healthcare Needs,” researchers found that roughly 5.6 million children with special needs are receiving 1.5 billion hours of at-home care that, if replaced with labor, would cost the U.S. health care system an estimated $12-$36 billion a year. The study also found that costs borne by caregivers who provide time-intensive care were greater for those who had children with more severe conditions. To read the abstract, click here (full study only available to AAP members). 

The Role Of Online Parent-To-Parent Support In Educating Parents Of Children With Special Health Care Needs

A new study from the Journal Of Medical Internet Research explores the role of digital parent-to-parent support and evaluates its effectiveness as a resource for parents of children with special health care needs. Researchers found that, with the aid of digital parent-to-parent emotional and informational support, parents often developed the ability to advocate for their child and gained a deeper understanding of their child’s condition. Also, because social media opens new opportunities, the researches also suggest that providers develop appropriate strategies to support parents through digital resources. To read the article, click here.

Health Access California Fact Sheets: Our Health Care At Risk

In light of the recent election and proposed cuts to health care, Health Access California has created two fact sheets that highlight the historical importance of Medicaid, Med-Cal, and the Affordable Care Act. The fact sheets also demonstrate the impact the proposed cuts could have on people with disabilities and low-income families. To view Our Health Care At Risk, click here, and to view the fact sheet specifically on Medi-Cal, click here.

Related: Urban Institute report: “Partial Repeal Of The ACA Through Reconciliation”

OPPORTUNITY FOR INPUT

RFA: State Teams Interested In Receiving Assistance In Adopting The National Standards For Systems Of Care For Children And Youth With Special Health Care Needs

AMCHP and the National Academy For State Health Policy (with support from the Lucile Packard Foundation For Children’s Health) are looking for state teams who’d like to receive peer-to-peer technical assistance as they adopt the Standards to improve their state system of care for children and youth with special health care needs. Applications are due by Jan. 23. To learn more about the RFA, click here, and to review the Standards, click here.

Genetic Alliance Seeks Feedback For Next Phase Of Strategic Plan

Genetic Alliance has created a survey to help shape the future of their organization and prioritize what’s important in the current health care landscape. To take the short survey, click here.

Related: When Scientists Failed Them, Parents Unlocked Genetics Of Kids’ Disease

WEBINARS

January 9: Partnering With Diverse Dads: Challenges And Successes

Sponsor: American Academy Of Pediatrics

More information and registration here.

January 9: Improving Care For Dual Eligibles: How States Are Innovating Through Medicare Advantage Dual Eligible Special Needs Plans

Sponsor: National Academy For State Health Policy

More information and registration here.

January 11: States And The Rising Costs Of Pharmaceuticals: A Call To Action 

Sponsor: National Academy For State Health Policy

More information and registration here.

January 11: How Can We Engage Families For System Change In Early Childhood?

Sponsor: Center For The Study Of Social Policy

More information and registration here.

Related: Ripples Of Transformation: Families Leading Change In Early Childhood Systems

January 12, 19, 26: Every Student Succeeds Act: A 3-Part Complete Series

Sponsors: Down Syndrome Affiliates In Action, National Down Syndrome Congress, and National Down Syndrome Society

More information and registration here.

January 18: Fetal Alcohol Spectrum Disorders: Screening, Assessment, And Diagnosis

Sponsor: American Academy Of Pediatrics

More information and registration here.

January 18: Improving Autism Risk Factors During The Perinatal Period

Sponsor: Autism Research Institute

More information and registration here. 

January 19: What You Need To Know About California Children’s Services, Genetically Handicapped Persons Program, Covered California, And Medi-Cal

Sponsor: Hemophilia Council Of California

More information and registration here. 

January 19: Policing People With Disabilities: The Intersection Of Race, Disability, And Policing

Sponsor: The Arc

More information and registration here. 

ARTICLES

Packard Children’s News Fall 2016 Edition: Shining A Light On Teen Mental Health

Prospects For Care Coordination For Children With Medical Complexity

Marked Racial Disparities In Money Spent To Help Disabled

Improved Airline Accessibility In The Works

Testing Stem Cells In Tiniest Hearts To Fight Birth Defect

More Dolls With Disabilities Escape The Toy Hospital, Go Mainstream

Philly Discovery For Kids With Leukemia Prepares To Go Global

Engineers Customize Christmas Toys For Children With Disabilities

How One Family Cares For Their Differently-Abled Son

#The27Percent: Patients With Preexisting Conditions Rally Online

Eight Things Siblings Of Children With Special Needs Struggle With

Child, Adolescent Autism Patients Visiting EDs In Higher Numbers

Patient Navigators Can Serve Crucial Roles In Hospitals

Kids And Mental Health: CHOC Builds Country’s First Inpatient Facility For Youths Ages 3-18

FDA Warns That Repeated Anesthesia Exposure Could Hurt Young Brains

This Toddler With A Rare Disease Got A Life-Changing Treatment. Why Can’t All Kids?

Inside The Race To Build A Therapy For A Devastating Rare Disease

Spinal Muscular Atrophy Drug To Cost $750,000 Per Patient