Breakthrough Patient Recruitment

: Why Treat Anyone with a Disability Differently?

Why Treat Anyone with a Disability Differently?

Director, Strategic Development

December 3 is International Day of Persons with Disabilities, created to promote action towards raising awareness about disability issues and draw attention to the benefits of an inclusive and accessible society for all. This year's theme is "Inclusion matters: access and empowerment for people of all abilities." Empowerment involves investing in people--in jobs, health, nutrition, education, and social protection. When people are empowered, they are better prepared to take advantage of opportunities, they become agents of change, and they can more readily embrace their civic responsibilities

One of this year's sub-themes is improving the quality of disability data and statistics. As a professional in the clinical trial industry, I know data and statistics are important to how clinical trials are planned, executed, and supported. Additionally, one of MMG's core commitments is the active education about clinical trials to all patient populations. The lack of data and information on persons with disabilities contributes to the invisibility of such individuals and may also impact the transparency of treatment and health care options. This sub-theme will also highlight measures to strengthen national capacities to improve and mainstream disability data collection. 

So while the United Nations (UN), World Health Organization (WHO), and the World Bank work toward aligning said data collection with existing best practices, how can we increase visibility for people with disabilities?

I reached out to an expert in my community, Michelle Woolf, who is the Montgomery Special Olympics (NJ) Local Training Program Coordinator. Michelle has two adult children with intellectual disabilities. She's been with the local program since its inception (2005) and is a big reason (along with all its volunteers!) the Montgomery Special Olympics program is so remarkable. 

Michelle shared that programs and schools specifically designed to provide education to children with intellectual disabilities, end when the child turns 21. These programs are intended to optimize each child's learning ability and are usually inclusive of related services, which are any developmental, corrective and support services, like physical and speech therapy or behavioral counseling. Children have everything they need from 4 to 21. But after graduation, many parents/caregivers are stunned at how difficult it is to continue supported services and find safe, appropriate, and stimulating programs. In fact, it has become common for Michelle to hear that parents are leaving their paid jobs to stay at home because they aren't able to find resources that help foster their child's growth and independence and encourage active particiaption/inclusion in sociey. Could this be one of the  challenges affecting data collection in the United States? Once the child ages out of the system, is data not being collected?

Although Montgomery is exceptional at mainstreaming and including people with disabilities, Michelle cautions that many children and adults with disabilities fall through the cracks. Often, these are children with aging/elderly parents or those in group homes. These individuals fall through the cracks because they "…don't have a voice of their own." But, if we join together and speak for them, we can all help advocate on their behalf, increase their visibility, and help our communities become much more rounded. We can do that by opening our eyes to our local community's needs, educating ourselves, and volunterring. 

After 11 years, the Montgomery Special Olympics program has grown to 50 athletes, a dozen coaches, and more than 60 volunteers and supporters. The Montgomery High School's "Project Unify" program, another nationwide Special Olympics initiatve, teamed with Montgomery Special Olympics four years ago. This program enables students of all abilities to positively impact their school communities by promoting equality, acceptance, and social inclusion by blending students with and without intelectual disabilities in sports.  

Michelle said that, "High school students are really volunteering for the right reasons and helping to give Special Olympics athletes a voice, helping them stand out and be accepted rather than put-up with." Michelle was also excited to share that in 2015, 22 high school students volunteered to give swim lessons to two Special Olympics children, resulting in 44 Special Olympic swimmers. The point she wanted to make was that unification and volunteering has two positive outcomes: Empowering those with special needs and giving them confidence;and, watching our youth leadership grow by taking a more active interest in partnering with organizations like the Special Olympics. She said, "Our nuero-typical youth aren't just making our community proud, they are becoming more well-rounded young adults." This alone provides those of all abilities with increased visibility, louder voices, and better chances to help the UN, WHO, and the World Bank with data collection.

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