Your Story Matters: Writing Campaign to Support Adults with IDD

A letter from Mary Sparkes-Merriman (aka, Pete’s Little Sister):

Hello Parents,

In early 2024, a group of patients, family members, caregivers, advocates, and healthcare professionals began meeting to discuss the need for a multidisciplinary clinic to address the unique health care needs of adults with intellectual and developmental disabilities (IDD) across the state of Michigan. As most of us are aware, there are many supports for children with disabilities, however, finding appropriate medical care once they begin to transition to adult care at age 16 becomes a struggle, as most doctors no longer provide services, leaving families to navigate the health care system on their own.

To help us further our mission and bring awareness to this ever-widening gap, we are inviting individuals with experience caring for patients with IDD (family members, caregivers, health care professionals… ) to join us in highlighting the medical challenges adult patients encounter across the state of Michigan. Our aim is to shed light on the specific obstacles/challenges (and successes) that families face when dealing with the healthcare system.

We will be reaching out to elected officials and policy makers to share these stories in hopes of securing funding to create a primary care/consult clinic of doctors who specialize in adults with intellectual and developmental disabilities.

It is our hope that these specialists will be available to consult with other physicians across the state in addition to training the next generation of doctors – thereby bridging the medical care gap across Michigan for adult patients with IDD.

Our ask of you is simple –

We are looking for stories to help illustrate the challenges people in the IDD community face in getting medical treatment, be it routine procedures and screenings or diagnosis and treatment. Your story is important, and your involvement can play a significant role in closing the gap in medical care for our families.

Please send your stories to mmsparkey@.comcast.net or directly to your elected official by using this link: https://www.legislature.mi.gov/Legislature/Legislators.

You will find a sample letter template below to help you in getting your thoughts organized for submission of your letter.

We are asking that all emails be submitted by May 15 – enabling us to complete our strategy for a June visit to Lansing.

One more thing – there’s a facebook group you can join to stay updated! It’s called MI Intellectual Developmental Disability Clinic Advocate. Click this link to join: www.facebook.com/share/g/165S1MWWq1/?mibextid=wwXIfr

Thanks for your support!