Positive Changes through Diabetes Parent to Parent and Diabetes Taskforce 

Summary  

The Center for Disease Control (CDC) published a study examining the number of young people under 20 with Type 1 Diabetes from 2002 to 2017. The researchers’ review of the data showed an increase in the diagnoses of Type 1 Diabetes. The researchers concluded that if the rate of new diagnoses continues to increase by the year 2060, the Type 1 Diabetes cases would increase by 65%. The study predicted higher increases in Black, Hispanic, or Latino, Asian, Pacific Islander, and American Indian or Alaska Native young people. CDC responded to these results as a call to action for health equity. Washington state responded to the CDC’s call to action by developing a Type 1 Diabetes work group. 

This article includes: 

  • A History of the creation of the Type 1 Diabetes Work Group 
  • Work Group Progress 
  • Future Direction 
  • Current Local Resources 

History of the Type 1 Diabetes Work Group 

In 2022, in response to a documented increase in the number of new diagnoses of Type 1 Diabetes (T1D) in children and youth in the state, and an increase in hospital admissions and near fatalities related to T1D complications, the Type 1 Diabetes Work Group was founded in Washington State. The goal of the Type1 Diabetes Work Group was to provide more support to the families of children with Type 1 Diabetes. The group includes parents, advocates, and medical professionals.  

The work group gathered information from professionals who treat patients with T1D to determine their priority needs. Twenty-two (22) healthcare professionals from around the state responded to the Work Group’s survey and identified these needs: 

  • More clinical support for the psychosocial complexity among youth with Type 1 Diabetes. 
  • Increase in mental health care providers familiar with diabetes. 
  • Community-based support groups. 
  • Financial resources and improved insurance coverage with no prior authorization. 
  • Better transition to adult care for young adults with diabetes. 

Families across the state with Type 1 Diabetes were asked to attend listening sessions and identify their needs. Thirty families participated in the Type 1 Diabetes listening sessions and identified their needs: 

  • More education on Type 1 Diabetes for school staff, including school nurses, office staff, and faculty. 
  • Childcare centers and preschools whose staff are trained to support children with Type 1 Diabetes. 
  • Understanding how to navigate insurance. 
  • Transportation and increased access to local endocrine clinics. 
  • Trauma-informed and compassionate care. 

The Type 1 Diabetes work group used information from both groups to develop their goals. 

Work Group Progress 

The work group has actively made Type 1 Diabetes support accessible to families. They created Diagnosis: Diabetes – Family to Family Health Information Center, a dedicated resource for sharing local and national resources on diabetes. 

They developed a Statewide T1D Coordinator role in partnership with PAVE and P2P, funded by the Washington Department of Health. The need for a Type 1 Diabetes information hub where families could easily go to get information on one page resulted in the creation of the Washington Family to Family Type 1 Diabetes Community Board. A T1D Family Support Program was established, providing parent-to-parent support services. An online parent support group is a planned expansion for this program. A T1D Teen Connect Support group was started and continues to serve teens. The group is led by a young adult volunteer with Type 1 Diabetes who can relate to the teen’s experiences. 

The Work Group worked with the Office of Superintendent of Public Instruction (OSPI), Washington’s state education agency, to develop Guidelines for Care of Students with Diabetes to align with the American Diabetes Association’s Helping the Student with Diabetes Succeed: A Guide for School Personnel. OSPI is the primary agency in charge of overseeing K-12 education in the state of Washington. OSPI allocates education funding for resources to support the education of students. to support the education of students. 

The Washington State Department of Health (DOH) created an eating disorder handout for healthcare personnel, including diabulimia, an eating disorder associated with Type 1 Diabetes.  A person with Type 1 Diabetes reduces or stops taking their insulin as a means of losing weight. This can have serious health consequences as everyone needs insulin to live. 

The group has also started improving the managed care organization referral process for families with children with Type 1 Diabetes. They created a poster for health care offices and social media to identify T1D new-onset symptoms.  

Future Goals: 

  • Building Washington State data on diabetes. 

Local Resources 

Washington Family to Family Type 1 Diabetes Community Board Padlet contains supports, resources, upcoming social events, workshops, and what is new in the news for diabetes. 

Seattle Children’s Hospital offers a diabetes clinic, support groups, education, workshops, and everyday resource guides and checklists, such as a travel checklist. 

Camp Leo is for children and young people with Type 1 Diabetes. Registration for the children’s and young people’s camp is open. Family weekend camp is in the fall. Registration for the family weekend camp is currently accepting applications. 

Resources Included in the article above: 

American Diabetes Association’s Helping the Student with Diabetes Succeed: A Guide for School Personnel 

Diagnosis: Diabetes -Family to Family Health Information Center 

Guidelines for Care of Students with Diabetes 

Managed Care Organization Referral Process 

T1D Family Support Program 

T1D Teen Support Group 

Diabetes info

Discovering that your child has type 1 diabetes can be an overwhelming and isolating experience. As parents, navigating this new reality brings a lot of questions and concerns. It’s essential to have the time and support to process your emotions and adapt to this new journey. Connecting with another parent who has faced similar challenges can make a significant difference.

You are not alone. We understand what you’re going through. Our T1D Family Support volunteers are here to provide compassionate support and valuable information. These volunteers undergo a comprehensive training program and are dedicated to offering assistance and resources (excluding medical advice) to other parents. Confidentiality is a priority, and our services are entirely free of charge.

Our Services Include:

  • Emotional support for parents of children with T1D
  • Information and referrals to state and community resources
  • Trained T1D Family Support volunteers who closely match your parenting experience
  • Social and recreational events such as camps
  • Up-to-date non-medical information and resources on T1D

Washington Type 1 Diabetes Family Support

Department of Health is partnering with PAVE (Washington State’s Family to Family Health Information Center) and Parent to Parent (P2P) to provide statewide support opportunities for families of children with T1D. To learn more about Washington state’s Type 1 diabetes support read the PAVE article Positive Change Through Diabetes Parent to Parent and Diabetes Task Force.

Are you a parent or caregiver raising a child with Type 1 Diabetes (T1D) and need support and information? Or…Are you a parent or caregiver raising a child with Type 1 Diabetes (T1D) and interested in providing support and information to a new parent?

Become a Mentor: This project will use the peer-to-peer model to develop resources to support families of children with T1D through parent support mentor training and recruitment.

New to T1D? Parent support is available through phone or video chat to connect with other T1D families with lived experience.

Have questions? Contact us! Email coordinator@t1dfamilysupport.com or call 253-330-9367.

Check out our Padlet full of helpful resources for managing Type 1 diabetes, with tips for daily care and staying healthy. Click the link below to find tools and support all in one easy place!

Learn about T1D Teen Connect!


Diabetes

According to the CDC:

Diabetes is a chronic (long-lasting) health condition that affects how your body turns food into energy.

Your body breaks down most of the food you eat into sugar (glucose) and releases it into your bloodstream. When your blood sugar goes up, it signals your pancreas to release insulin. Insulin acts like a key to let the blood sugar into your body’s cells for use as energy.

With diabetes, your body doesn’t make enough insulin or can’t use it as well as it should. When there isn’t enough insulin or cells stop responding to insulin, too much blood sugar stays in your bloodstream. Over time, that can cause serious health problems, such as heart diseasevision loss, and kidney disease.

Videos focused on the psychological and emotional parts of Type 1 Diabetes (T1D):

How to deal with Diabetes,
Distress & Burnout
How to stop striving for perfection
When will this get easier?
Will my kid have a normal life?
Why self compassion is
good for diabetes

Videos focused on the medical management of T1D:

How to dose for Pizza
How to exercise without the lows
Wait, what are ketones again?
Why isn’t my insulin working?

Diabetes 1 pager

Download the Type 1 Diabetes 1 pager info sheet Descarga la hoja de información sobre la Diabetes Tipo 1

Downloadable Resources

Articles

Websites

Washington State Resources

ADA Imagine Camp

Camp Leo for Children with Diabetes

Diabetes Association of Pierce County

Diabetes in School Health

Evergreen Health Diabetes Education & Nutrition

Jordan Morris Foundation

MultiCare Diabetes Services

Providence Diabetes and Nutrition Education

Samaritan Healthcare Diabetes Education & Nutritional Counseling

Seattle Children’s Endocrinology and Diabetes Classes and Workshops

STIX Diabetes Programs

Swedish Diabetes Education and Nutrition

Type 1 United

UW Medicine Diabetes Institute

These resources were created through a collaborative effort with the Type 1 Diabetes Workgroup; special thank you to Children and Youth with Special Health Care Needs (CYSHCN) for initiating this workgroup and to the Fostering Well-Being program for providing PAVE with your Type 1 Diabetes resource guide.