This newsletter was sent September 20, 2016. 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.

NEWS

Why I’m Fighting The State On Behalf Of My Son: Op-Ed Published By FVCA Project Leadership Graduate

In April, FVCA Project Leadership graduates attended an op-ed writing seminar led by Daniel Weintraub of California Health Report. In this published piece, graduate Yuki Baba discusses the trouble she’s had accessing critical physical therapy services for her 8-year-old son, Nate. Although his physicians agree he has cerebral palsy, Nate’s denied physical therapy through California Children’s Services due to the state’s definition of his disability. To read the op-ed, click here.

For more information on Project Leadership, an advocacy training that equips families with the necessary skills to engage in all levels of decision making on behalf of children with special health care needs, click here.

Related: When Autism Ages Out Of The School System, another op-ed written by a FVCA Project Leadership graduate.

RESOURCES

New Family-Professional Partnerships Section In Pediatrics Journal, Articles Needed

The American Academy Of Pediatrics (AAP) journal, Pediatrics, has launched a new section devoted to highlighting how health care professionals, patients, and families can work together to improve child and adolescent health. Articles are to be co-authored by a health care professional and a patient or family member and are accepted on a rolling basis. All articles focused on family-professional partnerships will be made free to the public. 

Sproutflix: Online Streaming Of Films Exclusively Featuring People With Disabilities

With a mix of feature-length documentaries, narratives, short films, animations, and music videos, Sproutflix is home to a diverse collection of movies featuring people with disabilities. Most films can be streamed for seven days for $15, or downloaded for $25. You can save 20% off all titles using the code backtoschool20 (valid until Nov. 1). To browse the films, click here.

New Autism Data Portal From The Child And Adolescent Health Measurement Initiative

Compiling the research from four national surveys, this portal provides easy access to data on the health and well-being of children and families with autism. In addition to helping people learn about family experiences, the portal can be used as an advocacy tool. It also allows you to see how others are using autism data. To access the portal, click here. 

UPCOMING EVENTS

Care Parent Network To Host Star Autism Conference In East Bay Area 

This conference aims to provide information for families who have children with autism ages 0-14 years. This year’s theme, ‘Moving Forward,’ will encompass topics such as how to handle a diagnosis, working with an applied behavior analysis provider, how to run a successful individualized education plan, and more. Date: Oct. 22. Admission: $25 per person, $40 per family. Limited scholarships and childcare stipends available. For more information, click here.

lnland Empire Disabilities Expo: 10-Year Anniversary Celebration In San Bernardino

This expo showcases the services and products that enhance independent living for people with disabilities. Exhibits will explore housing, transportation, advocacy, employment, assisitve technology, education, and youth initiatives. An entertainment lineup features wheelchair athlete Aaron Fotheringham and more.  Date: Oct. 22. Admission: free. For more information, click here.

American Academy Of Pediatrics Annual Conference To Take Place In San Francisco

The AAP National Conference And Exhibition is the largest pediatric technical exhibit of its kind and typically draws more than 10,000 professionals. The three-day conference offers over 350 educational sessions with hands-on learning and networking opportunities. Date: Oct. 22-25. Admission: various price points. For more information, click here, and to review the conference schedule, click here.

*Note: On Oct. 23, the FamilY Partnership Network will host a free networking reception in San Francisco for families who want to learn more about current AAP efforts to promote youth engagement. For more information on attending the reception, click here. 

OPPORTUNITIES FOR INPUT

Medical Cannabis Survey From The Child Neurology Foundation

In advance of their upcoming symposium, “Cannabis In Epilepsy: Clinical Science, Parent And Advocacy Perspectives,” the Child Neurology Foundation is looking for information on where advocacy partners, families, and other stakeholders stand on the topic of medical cannabis and epilepsy. To take the 15-minute survey, click here. Surveys must be completed by Sept. 27.

Innovation Challenge: How Do Social Determinants Shape Our Health Landscape?

Let’s Get Healthy California is looking to highlight innovations that address the factors that shape our health, referred to as social determinants. Anyone with a creative idea about how to promote a healthier California is encouraged to apply. Click here for contest details and information. A webinar for interested applicants will be held Sept. 29. To sign up for the webinar, click here. 

WEBINARS

Archived Webinar: 

Serving Youth With Co-Occurring Developmental And Behavioral Disorders. Click here to watch.

September 22: The First National Survey On Experience Of Care At Hemophilia Centers

Sponsor: Friends Of The National Center On Birth Defects And Developmental Disabilities

More information and registration here.

September 22: Disability Benefits And Cystic Fibrosis

Sponsor: Cystic Fibrosis Foundation

More information and registration here.

September 22: Early Start For Infants And Toddlers

Sponsor: Family Health Outcomes Project

More information and registration here.

September 23: Caring For Children With Sickle Cell Disease

Sponsor: Children’s National Health System

More information and registration here.

September 24: Beginning The Journey: A Family Guide To Navigating Early Intervention

Sponsor: Family Network On Disabilities

More information and registration here (two time options).

September 26: Caring For The Caregiver

Sponsor: Family Network On Disabilities

More information and registration here.

September 27: Zika: What Family Leaders Working In Public Health Need To Know

Sponsor: Family Voices

More information and registration here.

September 28: Maureen Durkin Dissects The Epidemiology Of Autism

Sponsor: Spectrum

More information and registration here.

September 28: The Importance Of Teaching Social Emotional Skills In Early Childhood

Sponsor: Early Childhood Alliance

More information and registration here.

September 28: Predictive Analytics In The Child Welfare System: The Basics

Sponsor: Alliance For Racial Equity In Child Welfare

More information and registration here.

September 29: Are You Concerned About Your Child’s Irritability?

Sponsor: The National Institute Of Mental Health

More information and registration here.

ARTICLES

Passing My Disability On To My Children

Screening Disability In Kindergarten Is Way Too Late, Experts Say

Parents Often Battle To Get Their Children Mental Health Services At School

My Daughter Only Goes To School Twice A Week, But It Means Everything To Us

Health Care Providers Scramble To Meet New Disaster Readiness Rule

Video Exams May Help Kids’ Access To Asthma Care

Language Barriers Impede Treatment Of Children With Special Health Care Needs

Training Police To Better Respond To Autism

Newly Covered By Medi-Cal, Undocumented Children Also Seek Dental Care

High Blood Pressure In Children

More Child Suicides Are Linked to A.D.D. Than Depression, Study Suggests

Parents, Nonprofits Unite To Create More Inclusive Playgrounds

September Edition of ‘Complex Child Magazine:’ Early Childhood

A Gamble On Deep-Brain Stimulation—Plus A Lot Of Hard Work—Gradually Pays Off For Colorado High Schooler

For Kids, Anxiety About School Can Feel Like ‘Being Chased By A Lion’

Camden School Nurses Take On Care Coordination

Child Neglect Claimed In Jerika’s Hospital Battle

Doctors Studied 42 Infants In Brazil With Microcephaly And The News Isn’t Good

Kaiser’s Autism Family Biobank Still Short 3,800 Families

Beginning July of 2017, thousands of children with a variety of medically complex conditions who are enrolled in California Children’s Services (CCS) will transition to Medi-Cal managed care plans.

Under the Department Of Health Care Services’ proposed Whole-Child Model, the state hopes that this transition will better streamline and organize care. SB 586 (Hernandez) was created to ensure that safeguards and protections are in place for children and youth with special health care needs during this period, and that continuity of care remains a priority. To read a list of the bill’s key protections, click here. 

SB 586 awaits Governor Brown’s signature, and Family Voices of California urges you to send a letter of support ASAP to bring to light the critical nature of the bill. To make it easy, we’ve created customizable letters in both English and Spanish:

• For families of children in CCS (English)
• For families without children in CCS (English)

• For families of children in CCS (Spanish)
• For families without children in CCS (Spanish)

For information on how to submit your letter, click here.

This newsletter was sent September 6, 2016. 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.

Living With Rett Syndrome: A Glimpse Into Lauren’s Medical Home, Day-To-Day Life

19-year-old Lauren Brady of Whittier is a pretty typical teenager. She loves Justin Bieber, stayed up until 3 a.m. at her high school grad night, and, according to her mom, Sherri, has a “certain standard” when it comes to looking her best. Diagnosed at age 3 with Rett Syndrome, a rare  neurological disorder that affects brain development and causes coordination and speech impediments, Lauren requires a wheelchair to get around, can’t speak, and needs a feeding tube. There are many moving parts to her comprehensive medical home that Sherri, who serves as Lauren’s primary caregiver, works with, often switching between ‘mom’ and ‘educator/advocate’ as Rett is still fairly foreign to many. Sherri’s goal is to stack Lauren’s care team with professionals who don’t view Rett as a hindrance or impossibility, but who are willing to learn from and work with the two of them. 

To read a Q&A with Sherri, click here. 

NEWS

SB 586 Passes Senate Floor, Heads To Governor Brown: Send Your Letter Of Support!

We’re one step closer—SB 586 (Hernandez) is headed to Governor Brown for a final signature! The bill, which passed the Senate floor unopposed on Aug. 29, will ensure continued quality of care for children and youth with special health care needs who are enrolled in California Children’s Services (CCS) as they transition to Medi-Cal managed care plans beginning in July of 2017. SB 586 advocates have tirelessly rallied to ensure that critical protections are in place during this transition. To read a list of the bill’s key protections, click here. For a customizable template letter of support, there are two options below:

• Letter of support for families of children in CCS.
• Letter of support for families without children in CCS.

Save The Date: FVCA Health Summit & Legislative Day To Be Held Feb. 27-28, 2017

Our 15th annual Health Summit will be held in February of next year in Sacramento. More information to come. To view photos, highlights, and presentations from this year, click here.

RESOURCES

Cystic Fibrosis Interactive Drug Development Pipeline And Clinical Trial Finder

The Cystic Fibrosis Foundation has launched a new interactive drug development pipeline and clinical trial finder. The pipeline shows both drugs that are in development and drugs that are currently being used, and you can sort by phases or therapeutic approach. The clinical trial finder lets you view open enrollment in your zip code as well as completed trials with results. To view the pipeline, click here, and to view the clinical trial finder, click here.

Supporting Young Children With Disabilities: Solutions For Improving Food Security

A new brief from Children’s HealthWatch looks at how the high costs associated with raising a child with disabilities can strain the family budget and lead to trade-offs between basic needs. The brief shows that families of children with special health care needs who received SSI were more likely to be food insecure compared with families of children with special health care needs who didn’t. To read the brief, click here.

Medical Home Modules For Pediatric Residency Programs And Educators

The American Academy Of Pediatrics has released five case-based educational modules on key medical home principles for pediatric residency programs. Each module is designed to be incorporated into existing curriculum by program directors and faculty. Collectively, the modules educate residents about the characteristics and benefits of the patient and family-centered medical home, care coordination, care planning, transition to adult care, and team-based care. To view the modules, click here.

EVENTS

10th Annual Celebracion de Familias Excepcionales Conference In Bakersfield

Exceptional Family Center will be hosting its 10th annual conference on Sept. 24 in celebration of the success of families and their children with developmental disabilities. There will be a keynote speaker, educational workshops, vendor displays, and Spanish-speaking presenters. Registration is $110 per attendee. For more information and registration, click here.

WEBINARS

September 7: Pediatric Acute-Onset Neuropsychiatric Syndrome

Sponsor: Autism Research Institute

More information and registration here. 

September 7: Integrating Oral Health And Behavioral Health In Primary Care Settings

Sponsor: SAMHSA-HRSA Center For Integrated Health Solutions

More information and registration here.

September 8: It’s Never Too Early For Vision: Planning For Life After School

Sponsors: TASH and Statewide Parent Advocacy Network

More information and registration here.

September 9: The History And Foundations In Prenatal Alcohol Exposure 

Sponsors: Statewide Parent Advocacy Network

More information and registration here.

September 12: 7 Secrets To A Stress-Free Start To Your Family’s Day

Sponsor: HealthyChildren

More information and registration here.

September 12: Can Transparency Improve Health Care Quality?

Sponsor: Center For Health Journalism

More information and registration here.

September 13: It’s A Great I.D.E.A! The Individuals With Disabilities Act

Sponsor: Family Network On Disabilities

More information and registration: 7am or 9am options.

September 14: How To Evaluate Quality Nutritional Supplements

Sponsors: The Johnson Center and Autism Research Institute

More information and registration here.

September 15: Happier Homework Hours

Sponsor: Learning Allly

More information and registration here.

September 15: Fruition: Families Demonstrating The Adult Lives That Are Possible

Sponsors: TASH and Statewide Parent Advocacy Network 

More information and registration here. 

September 16: Engaging Patients And Families To Improve Sepsis Care

Sponsor: Children’s Hospital Association

More information and registration here.

September 20: A Beginners Guide To Creating Accessible Documents

Sponsor: UNH Institute On Disability

More information and registration here.

September 21: Educational Planning For Students With Cochlear Implants

Sponsor: Laurent Clerc National Deaf Education Center

More information and registration here.

ARTICLES

Looking Out For Our Most Vulnerable Children

In Windsor, Specialized Dental Chairs For Special Needs Kids

On Radical Acceptance (& Not Fixing Your Kid)

How A Broken, $1 Billion State Program Leaves Californians With Cavities

When ‘The Talk’ Is In Sign Language, There Is Clarity And Confusion

Clinic For People With Sickle Cell Disease Opens In L.A.

Gaps In Care For Children With Special Needs Challenge Families

For A 6-Year-Old With Cancer, A Future Staked On Medicine’s Hottest Field

Family’s Experience Helps Korean Americans Change Mindset About Mental Illness

Heartbreaking Images Of How Zika Destroys Babies’ Brains

How Parents Harnessed The Power Of Social Media To Challenge EpiPen Prices

Audit: California Foster Children Overprescribed Psychotropic Drugs

Waiting List Placements May Violate ADA

California Lawmakers Aim To Tackle Rural Health Challenges

Subminimum Wage Changes Catch States ‘Flat Footed’

 

19-year-old Lauren Brady of Whittier is a pretty typical teenager. She loves Justin Bieber, stayed up until 3 a.m. at her high school grad night, and, according to her mom, Sherri, has a “certain standard” when it comes to looking her best. Diagnosed at age 3 with Rett Syndrome, a rare  neurological disorder that affects brain development and causes coordination and speech impediments, Lauren requires a wheelchair to get around, can’t speak, and needs a feeding tube. There are many moving parts to her comprehensive medical home that Sherri, who serves as Lauren’s primary caregiver, works with, often switching between ‘mom’ and ‘educator/advocate’ as Rett is still fairly foreign to many. Sherri’s goal is to stack Lauren’s care team with professionals who don’t view Rett as a hindrance or impossibility, but who are willing to learn from and work with the two of them. 

What are the components of Lauren’s current medical home?

First and foremost, a lot of my knowledge comes from other families of children and adults with Rett Syndrome. These families are going to be your best resource, and they’re #1 on Lauren’s team. Your own family and friends can help, but they have their limitations since they’re not doing what other parents (of children with disabilities) are doing.

As far as doctors, Lauren is seen at the Children’s Hospital Los Angeles Rett Syndrome Clinic—our touchdown place for all things Rett. It’s great to have a team that actually knows what we need. To this very day, I still go to appointments where no one’s heard of Rett. For example, I had to take Lauren to the emergency room the other night, and here I am trying to manage her care and pain while handing out brochures on Rett all at the same time. I’m often wearing two hats at once.

Lauren also sees a GI specialist and neurologist on a regular basis—those have been her mainstays. She’s always had a pediatrician, but we only go if she has a simple cold or I need  paperwork for school.

At the Adult Care Transition (ACT) Clinic Lauren attends, they focus on individuals with pediatric disorders who are becoming adults and need more specialized care. She’s recently started seeing a meds peds doctor here, or a practitioner who’s trained in general medicine and pediatrics. I think it’s going to work out great. The few people who tend to know a lot about Rett are pediatricians, and the chances of a doctor seeing an adult patient with Rett drops drastically. Even as they get older, a lot of their care is still more kid-like and kid-focused, but you still have to think about all the adult things you weren’t thinking about before. There’s been a few female adult issues that have come up, and it’s an area where Lauren was starting to have some concerns. It’s great to have people around at the ACT Clinic that are more trained in this area and know how to troubleshoot and identify solutions. 

When she was younger, Lauren had some vision issues and needed to wear glasses. While that issue kind of resolved itself, I still take her to the eye doctor here and there, just to make sure. She also goes to the dentist twice a year. The very first dentist I took her to only looked at whatever teeth happened to be showing and said, “she looks good to me!” Needless to say, we never went back to her. I was able to find a doctor who specializes in children with special needs through other families, and we’ve been going to him ever sense. When Lauren needed a root canal, I was lucky enough to be able to take her to Children’s Hospital Los Angeles. But, if we fast forward three years and that ever happened again, I’m not sure where I’d take her. This is something I’m hoping the med peds doctor will help us coordinate.

Lauren is fairly active with physical therapy, and her current therapist sees the growth that’s occurred in the past year. She’s open to trying new things with Lauren, and Lauren is gaining some skills back. While she isn’t able to walk independently, she can stand, bear weight, and walk with assistance—a huge help when it comes to me transporting her. Do I hope she’ll walk independently? Yes. Will I ever give up on preparing her body for that? No. With all the research that’s going on, something could come down the pipe tomorrow, and I want her body to be at its most optimal ability.

For Lauren and all girls with Rett, it takes a special kind of occupational therapist who is willing to think outside the box. There seems to be an “all or nothing mentality:” if you can’t brush your teeth or comb your hair independently, you’re not going to benefit from therapy. However, some people can do these things if you make adaptations. Pretty much everything that was adapted for Lauren during K-12 was adapted by me, and I think a lot of it could work for other girls.

How do you work with Lauren’s team to coordinate her care? 

We’ve been trying to figure out why she’s been having intermittent GI issues and pain for over a year. Just when we think we’ve got it under control, it comes back. Although it seems to be a GI issue, her neurologist and med peds doctor have both had some helpful input and suggestions. I try to keep all of her doctors aware of what’s going on, and I put on my basic care coordinator hat to make sure everyone is up to speed with copies of her tests. It’s hard and it’s a lot, but I feel like it’s the only way we’re going to get answers and I’m determined to get to the bottom of the issue.

What does a typical day look like for Lauren?

Since Lauren needs assistance with all her living skills, the day starts with a transition from bed to bathroom. Either before or after this, I give her a G tube feed. Next, we move on to dressing, hair, jewelry, and makeup. Lauren has certain standards, and it’s important to me that she look her best—she has enough challenges already. I want to help her put her best foot forward and for people to see her for who she is. 

On weekdays, she’ll typically go to her transition program, which is through the Whittier School District. Their end goal is for everyone to have a job, so they go out into the community and talk about things like money and spending. I know Lauren understands money, but because of her physical limitations, she’ll always need assistance since she can’t take bills out of her bag herself. I’m glad she’s able to have this experience since she loves the freedom of going places without me—she’s a very typical teen in that way!

Lauren has an outside augmentative and alternative communication (AAC) person that comes in to assist her with alternative ways of communication. This person also helps train teachers and staff to support Lauren in more fully participating in things from a communication standpoint.

On the weekends, we usually hang out with friends, go to Disneyland, a pool party, a picnic, the movies, or the mall. We also go to the Rett Clinic once a month to volunteer, and they learn a lot from Lauren being there.

How were you able to qualify to be Lauren’s paid caregiver through In Home Supportive Services (IHSS), and what obstacles do families face as they’re trying to qualify? 

Many families are prevented from tapping into beneficial resources because they don’t qualify financially. I understand the need for income guidelines, but they’re not always reasonable or fair. In most cases, they really don’t take into consideration the added expense that comes with having a child with special needs.

IHSS has an income component since the child must be receiving Medi-Cal in order to qualify.  Because of our particular situation, Lauren qualified for Supplemental Security Income as a child and therefore Medi-Cal, but that’s not the case for most. Luckily, some children are able to get Medi-Cal through the Institutional Deeming program at Regional Centers, but lots of service coordinators don’t bother to tell families about either program or the child doesn’t receive the needed services from Regional Center to qualify.

Those that qualify for IHSS are given a certain amount of hours based on their need so that they can hire caregivers. It’s harder for children to qualify because social workers will often argue that we (parents) would need to care for our children anyway.  The key is showing that the level of care is greater than a typical child. That may sound simple and obvious, but it is often quite a challenge.  If it is proven, as in Lauren’s case, that the individual not only has needs in the designated areas but also has the physical ability to put themselves in harms way, then they qualify for Protective Supervision and qualify for the maximum number of hours (283/month).

IHSS has often been the target of budget cuts, and they have threatened to no longer allow parents to be caregivers. Luckily this hasn’t happened, and as of this year the amount earned has increased due to the rise in minimum wage and the law requiring caregivers to qualify for overtime. 

There are still lots of problems with the program, but I am extremely grateful for the fact that it exists in any form because it’s my understanding that most states don’t have anything similar, and the ones that do usually don’t allow parents to be caregivers.

As Lauren’s primary caregiver, what kind of self-care do you practice to ensure that you’re at your best for her?

My friends sometimes push me to take time away from Lauren, but I really enjoy the time I spend with her! I’m extremely lucky in a lot of different ways: since she doesn’t have many health issues, it allows us to do social things. I know so many families that are in and out of the hospital because their child is having hundreds of seizures a day. If Lauren’s life and care were more hectic, I may need a break from that. The older she gets, the more I enjoy hanging out with her as well. We’re not going to see Barney anymore—we’re going to concerts and it’s somebody I want to see too! Also, a lot of people don’t understand that it’s actually not relaxing for me to be away from her because then I worry.  

What advice would you give to a family who just received a diagnosis where they know their child will require complex care?

Follow your gut—you know your child best. Don’t take “no” or “I don’t know” for an answer. Surround yourself with a team. My goal is to always find people who are willing to learn, acknowledge that I do know what I’m talking about, and work with us. I don’t want people to say, “well, she has Rett, so we can’t do XYZ.”