Reimagining the World for Individuals with Developmental Disabilities

March marked Developmental Disabilities Awareness Month (DDAM); an annual campaign designed to raise awareness about the inclusion of people with developmental disabilities in all facets of community life and to shine a spotlight on the barriers people with disabilities still face when connecting to the communities in which they live.

During the month, the National Association of Councils on Developmental Disabilities (NACDD) and our partner DD Councils create a social media campaign that helps clarify what developmental disabilities are, who people with developmental disabilities are and what matters to them, and celebrates the diversity, strengths and contributions of the developmental disability community.

This Year’s Theme: Worlds Imagined

As we started coming out of the pandemic, we wanted to choose a theme for this campaign that both reflected the experiences of people with intellectual and developmental disabilities (I/DD) during COVID and to look ahead and imagine where we want to be in the future. Our theme is aspirational and it helps us to examine what changes happened during COVID-19 that should become permanent, such as telehealth for example, and what changes we need in the future in order for people with I/DD, their families and caregivers to live well in the community

Life changed dramatically and not necessarily for the better for many people with I/DD during this pandemic. Some people with I/DD, who might have been successfully living independently in the community either alone or in a group setting, working or going to school, had to uproot their regular lives in order to stay safe and healthy or to protect others. Many had to stay at home or give up jobs they loved because they didn’t feel safe living or working in the community anymore. Other individuals lost access to their trusted direct support professional, job coach, or personal care attendant.

As we approached this year’s DDAM, we imagined a world where things have changed in a positive way and how that would further improve the lives of people with I/DD. That means a renewed focus on employment, education, community engagement, and health care delivery. We are exploring opportunities such as how to express ourselves better through art, advocacy, technology and learning. That work can be done in numerous settings and still be meaningful.

People with disabilities are all ages, races, ethnicities, religions and socio-economic backgrounds and express themselves in every way from writing, poetry, filmmaking and art to policymaking and advocating. Worlds Imagined gives individuals with I/DD the opportunity to showcase who they truly are. We want to learn about all aspects of a person’s world, not only about their disability. We want to imagine the new and ever-changing opportunities of the future, share stories and show what possibilities exist.

Worlds Imagined will also be the theme for the NACDD 2022 Annual Conference, July 18 – 22, 2022. Learn more at the NACDD website.

Working with MCOs and Others

We are also looking at the ways we are reaching Managed Care Organizations (MCOs) and individuals who are working with the I/DD community every day. By providing support and education, we can better help MCOs understand how they can address social determinants of health for all people with disabilities.

We know that MCOs worked incredibly hard to ensure individuals with I/DD and their families stayed as safe and healthy as possible during the pandemic. We were proud to partner with MCOs for better life experiences for people with I/DD.

The pandemic exposed issues such as mental health challenges like depression and anxiety often caused by loneliness or loss of the lifestyle individuals had pre-pandemic. Working together with MCOs we have been able to connect people with lived experience to teach and train MCOs about how to look at people not just as a patient, but a whole person coping with challenges in their life. Loss of a family member, a change in job status, or needing to let go of a direct support professional can have a huge impact on one’s health status and learning to engage fully with individuals with disabilities was key.

Measuring Success

The annual awareness month is largely run as a social media campaign through Facebook, Twitter, Instagram and TikTok. By capturing engagement and analytics, we can measure and learn what information is compelling for those with a stake in the information such as individuals with I/DD, loved ones, caregivers, organizations and others who share it.  

NACDD also uses rigorous metrics to evaluate the effects of the campaign to determine what individuals in the community want and need.  We are also looking at the ways local DD Councils are using the campaign to address challenges.

For example, using plain language and conveying information with images and iconography helps individuals with intellectual disabilities better understand written materials. With that in mind, the Massachusetts DD Council worked with their Governor’s office to write this year’s proclamation of Developmental Disability Awareness Month in plain language so that it could be understood by all.  

Making meaningful changes like this is what Developmental Disability Awareness Month and Worlds Imagined is all about. We look forward to a more inclusive future for people with disabilities.

Read more from Donna Meltzer

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