Mindfulness about Improving the Health and Wellbeing of Persons with IDD

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Mindfulness about Improving the Health and Wellbeing of Persons with Intellectual and Developmental Disabilities (IDD)

Karlyn G. Emile, MPH, CHESD.H.Sc. Candidate Nova Southeastern University 2016February 2015

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In February 2013, when charged with the task of overseeing the Special Olympics Florida

Healthy Community in South Florida, it was not entirely clear about the many trials those

individuals with intellectual or developmental disabilities (IDD) and their families’ experience.

The Healthy Community is a premier health care delivery approach that focuses solely on

individuals with IDD. More specifically, it offers free health screenings, health promotion

programs, and coordination of care in the following seven health areas: (a) dentistry, (b)

audiology, (c) podiatry, (d) physical therapy, (e) health promotion, (f) sports physical, and (g)

vision.

A few days after our first screenings, some local health care providers were contacted to

provide follow-up care to our consumers. Some of them blatantly told us, “We do not see

patients with IDD.” This was heartbreaking to hear, and so an attempt was made to understand

the underlying factors of why some health care providers would not see this population. Some

offices informed me that most of the IDD population has Medicare/Medicaid insurance and

allotted a specific amount of time for each procedure. In this population, some of the procedures

warrant almost twice the time that insurance companies will reimburse. Many other

establishments informed me that their staff is ill prepared to deal with this population, and yet

others told me that some IDD patients are disruptive to the entire office, and they simply cannot

accommodate them. Although we understand their stance, there has to be avenues for

overcoming these barriers.

People with IDD are often devalued or marginalized, but their medical issues are real;

their pain and ailments affect them as much they do those without IDD. Working with them for

the past 2 years, I have learned that they have dreams and aspirations like the rest of us. They

seek friendship, love, and affection; above all, they yearn for health and wellness.

More than one billion people in the world live with some form of disability of which

nearly 200 million have an intellectual or developmental disability (IDD), and the prevalence is

on the rise (World Health Organization [WHO], 2011). Individuals with IDD experience poorer

health than the general population (Krahn, Hammond, & Turner, 2006).

According to the Centers for Disease Control and Prevention/Disability and Health Data

System (DHDS), the disparities faced by individuals with IDD include the following: (a) more

complex health conditions, (b) limited access to quality health care and health promotion

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programs, (c) lack of preventative screenings, (d) poorly managed chronic conditions, (e)

obesity, and (f) mental and emotional health problems (DHDS, 2012).

Thankfully, many organizations are making strides in bridging these gaps. For example,

Special Olympics International (SOI) has taken the lead in advocating for individuals with IDD.

In just 2 years, Healthy Communities has offered health clinics and collaborated with

governments, businesses, universities, and community organizations. By training people with

intellectual disabilities to be peer health educators, and more, Healthy Communities has done the

following:

Provided 52,424 free health examinations at 404 clinics, in the seven health areas.

Linked 2,187 people to treatment for serious health conditions discovered through the

free examinations.

Offered health examinations and clinics in 116 new locations around the world, where

people would not have had access to care otherwise.

Trained 11,882 health care professionals to provide on-going, community-based care for

patients with intellectual disabilities.

Trained 382 Special Olympics athletes to be health educators for other people with

intellectual disabilities.

Delivered health education on locally-relevant topics such as healthy weight, HIV and

AIDS, and malaria to 18,292 Special Olympics athletes, their families and coaches; and

Engaged 9,884 people with intellectual disabilities in health education opportunities such

as fitness clubs and cooking classes.

Locally, in less than 2 years, the Special Olympics Florida Healthy Community has had

the following accomplishments:

Over a 1,372.00 screenings have been conducted.

Over 852 people have been referred to our network of local health care providers.

Fitted and dispensed 17 free hearing aids—Courtesy of Nova Southeastern University

(NSU) School of Audiology and Phonak Hear the World Foundation.

Awarded the NSU Community Garden Grant, which is served as a learning tool for

healthy eating.

Recruited and trained 30 Clinical Directors (CD).

A thriving health promotion and nutrition program that has served over 240 consumers.

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A strong Care Coordination team that has connected hundreds of consumers to services.

Three hundred fifty student volunteers from the following local colleges and Universities

have participated in our screenings- Florida International University, Nova Southeastern

University, Barry University, Chamberlain College of Nursing, Miami Dade College

Dental Hygiene Program, and Sanford Brown College.

Similarly, the American Academy of Developmental Medicine and Dentistry (AADMD)

was organized in 2002 to provide a forum for health care professionals who provide clinical care

to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). They aim at

improving the quality of health care for individuals with ND/ID. Students and residents are the

future of health care for patients with ND/ID, so they encourage them to become involved in

their national health care agendas for this population. Many universities have taken the

challenge to become involved and introduce their students/residency programs to the IDD

population via the AADMD Student Chapters.

Inevitably, a systematic interdependence approach can make a difference. An ecological

framework that gives equal importance to the influence of factors within each single levels. At

the government level, changes in policies can be made to improve health systems to ensure

equality. At the institutional level, universities can allow inclusion and exposure of this

population into their curricula. They can also encourage affiliation with organization such as

Special Olympics for internship/practicum placements. At the organizational level, doctors,

dentists, nurses, and other health professionals can agree to provide care to this population.

Although visits might require a bit more finesse and perhaps a bit lengthier, but we can see what

the alternative brings. Moreover, hospitals and private offices can make health resources more

available and affordable for people with intellectual disabilities. At the individual and

community levels, people can rally together to support, and volunteer with organization that are

striving to revolutionize the health and wellbeing of individuals with IDD. Please share in the

essence of embracing and supporting individuals with intellectual and developmental disabilities

at your respective capabilities.

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References

Centers for Disease Control and Prevention. Disability and Health Data System. (2012).

Retrieved from http://dhds.cdc.gov.

Krahn, G. L., Hammond, L., & Turner, A. (2006) A cascade of disparities: Health and

health care access for people with intellectual disabilities. Mental Retardation and

Developmental Disabilities Research Reviews, 12, 70–82.

World Health Organization. (2011). World report on disability. Geneva, Switzerland: Author.

Retrieved from http://www.who.int/disabilities/world_report/2011/accessible_en.pdf