One in six children in the United States will have a developmental delay or disability. Developmental disabilities begin during the developmental period of life, either prior to birth or during infancy.
The disabilities affect everyday living and most often continue throughout life because they impair the physical body, learning, language and/or one’s behavior. Developmental Disabilities include: Attention-Deficit/Hyperactivity Disorder, Autism Spectrum Disorders, Cerebral Palsy, Fetal Alcohol Spectrum Disorders, Fragile X syndrome, Down syndrome, Intellectual Disability, Kernicterus, Muscular Dystrophy, Prader-Willi syndrome, Spina Bifida, Tourette syndrome, intellectual disability, hearing loss, or a vision impairment.
From 1800 until 1950, many of the children born with developmental disabilities were placed in state institutions to live out their lives. Mental disabilities were known as “feeble-mindedness.” (“Parallels in Time: A History of Developmental Disabilities,” Minn Gov.) The wealthy however, kept their children with disabilities at home.
In January 1934, Germany began forced sterilizations of those with developmental disabilities, which later segued into euthanasia of the disabled. Before the rise of Hitler though, “the United States led the world in forced sterilizations (30,000 people in 29 states between 1907 and 1939).” These individuals were either in prison or institutions. “Advocates of sterilization policies in both Germany and the United States were influenced by eugenics. This sociobiological theory took Charles Darwin’s principle of natural selection and applied it to society. Eugenicists believed the human race could be improved by controlled breeding.” (“Nazi Euthanasia Program: Persecution of the Mentally & Physically Disabled,” Jewish Virtual Library)
In 1946, conscientious objectors of World War II established the National Mental Health Foundation in the United States. These 3,000 men had served in state mental institutions instead of going to war. Finding “horrific conditions,” these men continued to object. Their foundation publicized institutional abuse and began the move toward bringing people with mental disabilities out of state institutions. (“Conscientious objectors, media exposes, and institutional reform brought change for many,” Access Press, May 10, 2010)
After World War II, many countries, including the United States stopped the forced sterilization of patients (eugenics) because the practice was viewed as being associated with the former Nazi regime.( War Against the Weak: Eugenics and America's Campaign to Create a Master Race. Black, Edwin, 2003)
On September 2, 2014, a glass monument was publicly placed on display in Berlin, remembering nearly 300,000 victims with mental and physical disabilities put to death by the Nazi regime. (BBC) This was a full 80 years after the beginning of the German eugenics program in 1934.
As the men who spoke up for the rights of the institutionalized during World War II, today’s parents of children with disabilities are the objectors. As ongoing advocates, they are preparing their children for life outside of institutions and life without parents.
The United States sits today at the tipping point of a grass roots civil rights movement for children with developmental disabilities. These are an entire generation of children, now grown, who are entering society for the remainder of their lives. David Morstad, M.Ed., Executive Director of the Bethesda Institute wrote in 2012, “Based on percentages of the population, about 4.6 million to 7.7 million people are affected, although the actual number may very well be higher. The mere fact that people with disabilities are both hard to find and hard to count is itself evidence of the ongoing need for advocacy in the field.” (“How Prevalent Are Intellectual and Developmental Disabilities in the United States?” Bethesda Institute)
Melody Hearn, the mother of an adopted son with Down syndrome, is a champion for disability rights and education. She is the chairperson of Family Care Council, Area 15, covering the Treasure Coast of South Florida. Mrs. Hearn states that the beginning of independency for a child with a disability begins with early intervention. No longer are these children to be placed out of sight and out of mind, instead they are to be given help from the very first.
Melody and her husband, Dannie Hearn, waited and prayed seven years for a child. One day, their church pastor phoned, asking if they were yet interested in adopting a child. He had just received a phone call from an older mother-to-be who was unwed and wished to place her child in a good Christian home. Not long afterward, Melody stood in the delivery room, watching her son Matthew being born into the world. Immediately doctors saw that the baby was in distress and he was transported to a nearby city hospital to receive neonatal care, genetic testing confirming Down syndrome, and direction toward early intervention. From infancy on, Matthew received many types of therapies which included speech and oral motor exercises as well as physical and occupational therapy. These helps increased his ability to thrive.
Melody Hearn has found necessary the need to document her son’s needs. With documentation as evidence, she has been able to advocate for Medicaid waiver monies as needed. Without this funding, her son and others like him, would not receive services which help them remain active in the community. Melody Hearn states, “Studies have found that with early intervention, increasing care, and medications, those with Down syndrome can do what their peers do: go to school with inclusion (best practices), but this is not yet the norm in local schools. Students with disabilities must also be allowed to participate in school plays, sports, clubs, scouts, etc… These children can ride bikes, play the piano, and keep their parents active.”
Because of advocacy, babies with Down syndrome, like Matthew Hearn, are no longer being placed in institutions, but are being adopted. The National Down Syndrome Adoption Network places children with families for adoption in the United States.
Matthew has become Melody’s life. At age 15, the young man also is a champion sportsman with Special Olympics. He desires to go to college and wishes to be a construction worker.
In Florida where the Hearns reside, the University of Central Florida will launch a program for students with disabilities to continue their education in the fall of 2015. Mrs. Hearn urges parents and society not to “believe the myths.” Children with disabilities grow up to become adults who can work in the community.
People with Down Syndrome and other developmental disabilities are living longer, thanks to medications and increased training. 25 percent of those with Down Syndrome though will develop early onset Alzheimer’s in their 40s. One in 42 boys will be diagnosed with autism in the United States. Researchers in 1995 believed the worldwide rate to be one in 500 children. Those children are 20 years old today. They will require continuing care as they outlive their parents. What will happen to them?
Florida’s advocates and people with disabilities are looking to a sunny future.
Outside of Jacksonville in northern Florida, an employability community for citizens with disabilities is in the works. The Arc Village will include independent housing and group homes located near businesses which will provide work. On the outskirts of the community will be retirement homes for the parents.
Noah’s Landing is another planned community between Tampa and Orlando.
Outside Melbourne, in Brevard County, Florida, Promise is preparing a residential community for special needs adults. They were recently awarded $15.8 million from the Florida Housing Finance Corporation.
Osprey Village is being planned for people with autism and their aging parents in Naples, Florida.
Indian River County, on Florida’s Atlantic seaboard has closed a former teenage boys’ correctional institution. Bigger Dreams Inc. has plans to remake the campus into a community for adults with special needs.
Though Melody and Dannie Hearn are not alone in the adoption and rearing of a child with Down syndrome, they are unusual. Because of their son’s presence, they have continued on in a life of faith, “praying a whole lot more,” Dannie adds.
Melody Hearn has become a State of Florida leader in advocating for the civil rights of children with developmental disabilities. As a State of Florida, Governor-appointed chairperson for Family Care Council, Melody Hearn travels, hosts, and educates other parents of children with disabilities. She also helps others make their own stories known. In government meetings, Melody advocates for individuals with disabilities—to improve their quality of life.
Advocacy in her district on the Treasure Coast (Martin, St. Lucie, Okeechobee and Indian River counties) is yet young but has been steadily growing during the last 15 years. Project Search is a high school transition program that provides on the job training and experience to students with disabilities. Melody Hearn says, “A few years ago, strong advocates brought Project Search to the Treasure Coast in Martin County. We have been advocating for St. Lucie County to do the same.” Project Search has limited availability, but for those who participate, their opportunity for employment is significantly increased.
In July 2014, Florida’s Employment First Initiative went into effect. Issued by Governor Rick Scott, he “reaffirmed his commitment to employment as ‘the most direct and cost-effective means in helping an individual achieve independence and self-fulfillment, which should be the primary objective of public assistance programs wherever possible.’” Mrs. Hearn adds, “We need more to fill the needs of young people with Intellectual Disabilities if we are going to meet the Governor’s Employ Me First Initiative.”
Melody Hearn believes there is much more to be accomplished and this is only the beginning of a grass roots civil rights movement. New national government rulings to come in line with (AHCA) Agency for Health Care Administration will mandate over the next five years full inclusion in for people with disabilities in the community and that they not be segregated or forced into institutional settings.
Mrs. Hearn’s, closing words, “The walls are coming down.”
How we treat others, especially citizens with disabilities, who are often our children, is a reflection of what we are. It takes courage to stand up and speak out as Melody Hearn does. The grass roots movement of advocacy is changing the destiny of many in the United States; whether they are children or adults, those with disabilities are loved, wanted and finally viewed as a most necessary part of society.