Developmental Disabilities and the Philanthropic Community

Definition

Developmental disabilities are a group of conditions due to impairment in physical, learning, language, or behavior areas. These disabilities are labeled ‘developmental’ because they begin during the developmental period of a child’s life. Developmental disabilities are more common than you may think; recent estimates from the Center for Disease Control and Prevention show that about 15% of children aged 3 through 17 years old have one or more developmental disabilities.

Some common developmental disabilities include the following:

• ADHD (people with ADHD may have trouble paying attention)
• Autism Spectrum Disorder (causes significant social, communication and behavioral challenges)
• Cerebral Palsy (affects a person’s ability to move and maintain balance and posture)
• Hearing Loss (affects a child’s ability to develop communication, language and social skills)
• Intellectual Disability (limits a person’s ability to learn at an expected level and function in daily life)
• Muscular Dystrophy (genetic disorder that results in muscle weakness over time)
• Down Syndrome (genetic disorder causing developmental and intellectual delays)

The philanthropic community supports individuals with developmental disabilities through organizations like the Arc Alliance and Easterseals Crossroads, community events such as World Down Syndrome Day Celebration in Colorado and the Special Olympics Unified Sports throughout the country. A few specific programs that philanthropic organizations make possible at a low-cost include physical therapy to develop strength and motor skills, occupational therapy to gain normalcy in daily activities, speech-language therapy to help develop communication skills, driver evaluation and training programs, and more.

Historic Roots

In today’s culture, because of philanthropy and the advancements in science for understanding the needs of people with developmental disabilities, we have the aforementioned programs, events and support from the community. Public and scientific understanding of these disabilities has come a long way. In the early 19^th century, the community did not respect people with mental disabilities. Institutions put people with disabilities into poorhouses because they were considered not only poor or sick but also because they were thought to be inadequate, outcasts, and an inconvenience for the rest of society.

The first major change regarding society’s view of the concept of a disability came from Jean-Etienne Dominique Esquirol, a famous psychiatrist in France. Esquirol came up with new concepts and terminology to describe individuals with disabilities, bringing a great amount of conceptualized awareness to society. Dorothea Dix, a social reformer in the late 19^th century, advocated for better services for all persons with disabilities. Dix had a specific appeal, passed by both houses of Congress, asking that the United States set aside 5 million acres of land throughout the nation to accommodate persons with disabilities. This appeal, along with Dix’s future supporters and influencers, paved the way for proper institutions to focus on individuals with disabilities.

Philanthropic support of the developmentally disabled community started with little support from the business and public sectors. Up until the 1980’s, a big number of individuals with disabilities in the United States lived in "dehumanizing places of custodial care." These institutions were filthy, unorganized, overpacked with people, and overall inhumane.  In the 1950’s, all children with IQ scores below 50 were excluded from the public-school system. Institutionalization and exclusion were two main factors in the beginning of community-based programs and organizations to provide services to the families and children being affected by disabilities.

Importance 

The effects that a developmental disability has on an individual or family are life-lasting and can be extremely difficult to deal with financially, socially, and psychologically. Autism Spectrum Disorder (ASD) is a developmental disability that can cause social, communication, and behavior challenges. People with ASD may behave, engage, and act in ways that are different from other people. This proves difficult for children to stay engaged in school because of learning and communication discrepancies. ASD makes it tough for some students to "fit in" with society and can lead to anxiety, depression, and other mental health disorders.

Another developmental disability is Cerebral Palsy (CP). There are four main types of CP, but generally, it is a group of disorders that affect a person’s ability to move and maintain balance and posture. A person with CP might need to use special equipment to be able to walk and might need lifelong care. There is no cure for CP, but treatment such as medicines, surgery, braces, and physical, occupational and speech therapy are all available. These services can be costly and consistent throughout the individual’s life and can make it financially tough for the family and individual. It can also be difficult for parents to find appropriate care for their children, from referrals to specialists to finding family-centered care.

Ties to the Philanthropic Sector

Philanthropic organizations and volunteer groups can give families and individuals that have developmental disabilities the support they need. Organizations like Easterseals and the Arc Alliance are in almost every state in the country to provide accessible and low-cost resources that help children and adults with disabilities gain the confidence they need to succeed in their communities. Programs and summer camps designed specifically for individuals with disabilities help support their mental and psychological well-being.

From the 1960s to today, non-profit organizations and volunteer groups have played a major advocacy role in increasing the country’s awareness of existing conditions and the services and programs that are provided to families and children being affected by different types of disabilities. The philanthropic sector has played a vital role in the integration of individuals with developmental disabilities back into the education system and their public communities, so they have equal opportunity to be contributing members of society. 

Key Related Ideas

• Art, Music and Dance Therapy - Therapeutic resources for children and adults with development disabilities. These types of therapy help improve social, physical and mental skills through music initiatives like playing an African drum, drawing a picture of their favorite memory, or learning a swing dance. These resources can be extremely helpful to individuals with developmental disabilities.
• Psychological and Mental Disabilities - Disabilities that affect mood, thinking and behavior. These disabilities impact multiple life areas and create distress for the person experiencing them and the surrounding family. These disabilities can happen as an effect of developmental disabilities.
• Special Education - The practice of educating students in a way that addresses their individual differences and needs. Special education helps students with disabilities with adapted equipment, accessible settings and one-on-one attention.

Important People Related to the Topic 

• Scott Fogo - Vice President of Clinical Services at Easterseals Crossroads in Indianapolis for over 10 years. He worked with children and families who had autism spectrum disorder and is responsible for endless success stories at Easterseals.
• Steve Shirley - World known philanthropist and funder/supporter of projects and programs in autism. She created the Shirley Foundation to fund new and successful projects and organizations related to autism care aimed at making significant differences.
• Eunice Kennedy Shriver - Founder of the Special Olympics. She was a pioneer in the worldwide struggle for rights and acceptance for people with intellectual disabilities. She believed that sports could be a common group to unite people from all walks of life.
• Gunnar Dybwad - Dybwad was a leading figure in the disability rights movement. He was an advocate for normalization, deinstitutionalization, inclusive schooling and self-determination.

Related Nonprofit Organizations

• Easterseals Crossroads - This organization’s main purpose is to change the way the world defines and views disability by making profound, positive differences in people’s lives every day. They implement programs and activities related to education, social life, employment and recreation. https://www.eastersealscrossroads.org
• The Shirley Foundation - This organization has contributed over 20 years of funding and research in autism to support the developmentally disabled community. The Foundation has started multiple organizations like Kingwood, Prior’s Court Foundation, Autism Cymru and Autistica, all supporting the autistic community. http://www.steveshirley.com/shirley-foundation/
• The Arc Alliance - A family focused charitable organization based on supporting individuals with intellectual and developmental disabilities throughout life. They provide family resources that assist in navigating the issues, services and support they need. https://thearcalliance.org
• The Global Down Syndrome Foundation - An organization dedicated to significantly improving the lives of people with down syndrome through research medical care, education and advocacy. https://www.globaldownsyndrome.org
• Special Olympics - A global movement of people creating a new world of inclusion and community, where every single person is accepted and welcomed, regardless of ability or disability. This organization helps to make the world a better, healthier and more joyful place - one athlete, one volunteer, one family member at a time. https://www.specialolympics.org

Reflection Question  

How do you think having first-hand experiences with individuals that have developmental disabilities might affect people's opinions about the importance and need for philanthropic organizations and efforts?

Bibliography

• Bersani, Hank. 2018. “Gunnar Dybwad: American Author, Administrator, and Activist.” Last updated September 9, 2018. 
• Centers for Disease Control and Prevention. 2018. “Facts About Developmental Disabilities.” Developmental Milestones. 
• Easter Seals Crossroads. 2018 Annual Report. “This is disability.”
• Global Down Syndrome Foundation. 2014. “Global Down Syndrome Foundation Breaks Record by Raising $1.9 million.” Business Wire. 
• Global Down Syndrome Foundation. 2018. “Founder’s Story.” Grandparents making a difference. 
• Kramer, Laurie. Houston, Doris. 1999. “Hope for the Children: A Community-Based Approach to Supporting Families Who Adopt Children with Special Needs.” Child Welfare, vol. 78 issue 5: 611-635. 
• Longmore, Paul K. 2003. Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University Press.
• Nasrallah, Henry A. 2014. “Can philanthropy fill the unmet needs of psychiatry?” Current Psychiatry, vol. 13 no. 9.
• Special Olympics. 2018. “About Eunice Kennedy Shriver.” 
• Shirley, Steve. 2017. “Celebrating the Shirley Foundation’s contribution: 20 years of funding and research in autism (1996-2016).” Good Autism Practice, vol. 18, no. 1. 
• The Minnesota Governor’s Council on Developmental Disabilities. 2018. “Parallels in Time: A History of Developmental Disabilities.” 
• Wehman, Paul H. 2011. “Employment for persons with disabilities: Where are we now and where do we need to go?” Journal of Vocational Rehabilitation, no. 35: 145-151.