This newsletter was sent July 12, 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.

Born with spina bifida, hydrocephalus, bladder and bowel dysfunction, and clubbed feet, 21-year-old Derek Longwell has had 43 surgeries in his lifetime. His care map spans a vast network of specialists and services that he relies on for treatment, medical equipment, and support.

Before Derek turned 21, he was worried he wouldn’t have access to the services he needed—this age marks a pivotal period for youth with disabilities as they must transition away from pediatric-centered care and towards a different set of adult providers. For many, this period also includes learning how to advocate for one’s own health care and practicing skills that pave the way for lifelong independence.

Derek was willing to share with us how he and his mom, Wendy, worked together to ensure he was prepared for this change.

How did the transition from pediatric care to adult providers impact your overall experience?

My mom and I worked with California Children’s Services (CCS) and got referrals to Stanford so that we could meet my adult providers ahead of time. I really like my Stanford doctors and I am happy that CCS helped me meet them before I had to switch!

What could be done to improve the transition process?

It’s important to make sure there’s a network of support for those who don’t have someone at home to help them. Transition was a very stressful time for me because of all of the paperwork that came in the mail for me to fill out. Without my mom, I wouldn’t have been able to complete everything.

*Wendy notes that for a more streamlined transition, she believes medical records should be shared with the child’s new plan at least six months in advance, not 90 days. She ran into a waterfall of issues while attempting to get an initial appointment with Derek’s managed care plan, and they didn’t actually receive his records until after he turned 21:

I got a letter from our new managed care plan stating Derek would be transitioning in two months and that I needed to pick a new primary care physician. I called and emailed asking to set up an appointment. I waited a month and then emailed the people I knew who were higher up in the chain of command. I was then given an appointment four days before Derek’s 21st birthday. When he and I showed up, they told me they sent an email that morning cancelling the appointment. I then gave our managed care plan copies of Derek’s conservatorship paperwork and a list of his doctors since they’d received nothing from the state. I followed up with a couple other calls and several emails before everything was finalized. Now, we’ve been assigned a case worker who lives in Eureka (a 3-4 hour drive vs. a 30 minute drive to get to our CCS office). All of this should have been done before Derek turned 21. He had his 43rd surgery in April—what if he needed an operation directly after his birthday? They wouldn’t have been ready!

During this critical period, family engagement is crucial. How did having the support of your mom, and others, ease transition?

My mom took care of most of the transition issues like medications, supplies, and doctors. CCS made sure I had all new equipment (wheelchair, braces) and that our new house was set up for me with a grab bar, shower bench, etc.

What are some things you do to manage your own care?

It’s really hard for me to talk to people I don’t know (especially over the phone) unless I have practiced what I am going to say. So far I have taken over calling to get my wheelchair and braces repaired. As far as doctors are concerned, when I have an appointment I talk to my doctor and my mom fills in the spots when I forget something important. We make a good team!

As far as a career or occupation, what are some of your down-the-line goals?

College was very difficult for me with all of my health issues and my learning disabilities. My papa has a wood workshop and I really enjoyed working in it with him when we visited him in Idaho. My mom helped me set up my own shop and I have been learning how to make things. So far I have made gifts for friends and family. I also refinished an aquarium stand and top as my first paid job. My ultimate goal is to open my own store to sell my stuff in.

What advice would you offer to others who are going through transition right now?

Don’t give up when it gets tough. There are people out there who will help you at places like Rowell Family Empowerment, where my mom works.

Related: check out the Hydrocephalus Association’s Transition Guide For Teens And Young Adults.

NEWS

July 27 Webinar: Family Protections And Continuity Of Care In The New “Whole-Child Model”

This webinar is intended for parents who live in one of the 21 counties where kids in California Children’s Services will be moved to Medi-Cal managed care beginning next year. Presenters from the Western Center On Law And Poverty and Disability Rights California will discuss how to keep your child’s current providers during this transition, your continuity of care rights, and your protections. They’ll also cover what to do if you have grievances, how to get a second opinion, and how to appeal decisions. To sign up for the webinar, click here.

Assembly Committee On Health Passes California Children’s Services Bill, SB 586

On June 28, the Assembly Committee On Health voted unanimously to pass an amended version of SB 586, a bill intended to streamline care for some medically complex children by moving them from CCS to Medi-Cal managed care programs. The Department Of Health Care Services also released a feedback sheet in response to advocate’s suggested amendments. The bill will now move to the Assembly Appropriations Committee. To read more, click here, and to listen to a recording of the June 28 hearing, click here.

RESOURCES

Recordings From Co-Occurring Developmental Disabilities And Mental Health Issues In Transition Aged Youth Conference

Session recordings and corresponding slides from the Children’s Hospital Los Angeles and University Of Southern California’s Community Education Conference are now available. There are over 15 presentations that cover transition-related topics such as making and keeping friends in young adulthood, excessive restraint and seclusion in schools, competitive integrated employment, and the impact of health and fitness in the special needs community. To view the presentations, click here.

Hand In Hand: Summer Newsletter From The Down Syndrome Research Foundation

The summer edition of Hand In Hand focuses on behavior and provides tools and suggestions for stopping problematic actions before they turn into bad habits. Topics covered include positive behavior support, addressing stubborn behavior, and more. In addition, the newsletter also highlights a new section of DSRF’s website that’s packed with resources on Down Syndrome and Alzheimer’s Disease. To read the newsletter, click here.