Protecting the Most Vulnerable

Throughout most of history, people with disabilities lived on the margins of society. They were most often destitute, begging on the streets or wasting away in poor houses. Social reformers in the mid 19th century began to believe that with some education, children with disabilities could grow to contribute to society in a positive way. Training schools were opened to offer pupils advancement in motor and sensory skills, basic academic education, and lessons in self-sufficiency. The goal was to prepare students to return home and interact in a positive way with the rest of society. For those with mild disabilities, these schools proved to be a great success, giving families hope and assistance for the first time. And as word spread, more and more training schools opened around the country.

But with the economic downturn in the late 1850’s and the outbreak of the Civil War, focus on training children with disabilities diminished. These children began to be seen by society as a financial burden, rather than a population that needed to be helped. The educational focus of the training schools quickly turned into a custodial one. Parents were told there was little that could be done for their children, and it was best to place them in these institutions where at least their physical needs could be met. Because it was difficult for physicians to tell the difference between mental illness and developmental disability, these two populations were often intermixed within the same facility. They were called ‘asylums,’ meaning ‘secure retreat,’ and the residents were now referred to as ‘inmates’ rather than ‘pupils.’

It didn’t take long for the expense of such institutions to drain available public funds. Efforts were made to economize and to make the institutions more self-sufficient. Despite their limited resources, many facilities attempted to maintain their integrity as places of compassionate care. But over time, most were not successful.

In some locations, higher functioning children were used as free labor to work in laundries and farms. But as overcrowding increased, supplies still ran low and children within these institutions suffered from neglect. Stories were told about children sleeping on floors, rarely being bathed, seldom going outside, having inadequate nutrition and clothing, and spending almost every day in the same room.

Many children also lived in daily fear of their caretakers. Overworked and underpaid, it was not uncommon for members of staff to take out their frustrations on the children, abusing them both verbally and physically, and, in some cases, sexually. Visits from family members were discouraged and at times, outright denied. There was little oversight, and what went on inside the institutions became shrouded in secrecy.

Segregating those who were different was common practice in society during this time. Unless a family was wealthy enough to care for a disabled child at home in private, parents were pressured to place their children in these institutions- physicians and government officials insisting it was the best place for them. These placements became standard practice by the late 1800’s and continued for many decades into the 20th century. Many children grew up in institutions, never knowing the love of a family.

In the 1920’s, reform movements began to form in small disorganized groups around the country. A few educators noticed that some of their mildly disabled students benefited from one-on-one attention, and the seeds for special education began to be planted.

Some parents of children with disabilities, traumatized by the separation, began to organize in hopes of supporting each other. Many wanted to bring their children back home, but their biggest hurdle was the lack of community services and their inability to financially meet their children’s medical and educational requirements. All state funding at this time went directly to the institutions.

Another roadblock parents ran into was the misconception that they themselves were responsible for their children’s disability. It was a common belief that children were born disabled because of the moral failings of their parents. The concerns and wishes of parents were rarely taken seriously and doctors continued to encourage institutionalization.

An unexpected breakthrough came during WWII when many of the male members of staff at these institutions were drafted into the war. In some cases they were replaced by conscientious objectors, who subsequently conscientiously objected to the conditions they discovered inside these state run facilities. They were outspoken, and were able, for the first time, to raise public awareness about the circumstances in which these children were living. After being invisible for decades, the plight of people with disabilities was finally the focus of public attention again.

After the war ended and the United States began to enjoy an economic boom, people were able to refocus on social reform. Parents began to organize with new fervor and demand better services for their children. Many of them started their own services in their homes and neighborhoods, but they still lacked funding and support from society at large.

Two courageous mothers made a huge impact on public opinion during the 1950’s when they published books about their disabled children. One was Pearl Buck, the Pulitzer and Nobel Prize winning author of The Good Earth. And the other was Dale Evans, the wife of American singer Roy Rogers. Public opinion swayed against state run institutions in response to these books, and funding for parent organizations began to pour in from private donors. More and more parents formed their own organizations and demanded better services for their children. By the end of the 1950’s, national parent organizations were gaining strength and lawsuits were being filed to force states to recognize the rights of people with disabilities.

During this time, politicians began getting involved and making public statements in support of disability rights. Governor Youngdahl of Minnesota said, “… the retarded child is a human being…. He has the same rights that children everywhere have. He has the same right to happiness, the same right to play, the right to companionship, the right to be respected, the right to develop to the fullest extent within his capacities, and the right to love and affection….” These words took the world by storm. Nothing like it had ever been said about a child with disabilities before, and for the first time, some of the prejudice against children with disabilities and their parents began to wane.

President John F. Kennedy further bolstered the movement when he spoke publicly for the first time about his sister, Rosemary, who had disabilities. Another sister, Eunice Kennedy Shriver, wrote an article about Rosemary that appeared in the Saturday Evening Post, which further alleviated some of the shame and stigma surrounding having a family member with disabilities.

President Kennedy took it one step further when he organized the “President’s Panel on Mental Retardation” which, after much research, wrote a report that led to new legislation that authorized funding for extensive research on the diagnosis, treatment, and education of children with disabilities. For the first time the federal government had gotten involved in finding solutions for the challenges faced by these children and their parents.

Over the next decade, the movement continued to gain steam, and in 1975, the United Nations signed the “United Nations Declaration on the Rights of Disabled Persons,” which inspired laws that would eventually be passed in many countries around the world. In America, PL-94 142: The Education of All Handicapped Children Act was passed, which guaranteed a free appropriate public education to each child with a disability. 

But despite the progress being made on the national and international scene, many children still lived in institutions. The national attention hadn’t trickled down to substantive change for individual families. Community services and mainstream education were still not available for most children with disabilities. And many in authority insisted that because of better funding and efforts at reform within these institutions, they were still the best place for these children to be.

But in 1973, an organization called the Children’s Defense Fund noticed that 750,000 children appeared on the U.S. Census as not attending school. Upon further research, it was discovered that these children had disabilities and were not being educated by the public school system. The Pennsylvania Association for Retarded Children used this data in their lawsuit against the U.S. Department of Education. The Federal District Court ruled in favor of the children, which led to the passing of federal law mandating that all children, regardless of ability, should be educated by the public school system- something that had never been possible for children living in institutions.

Over the next fifteen years, this legislation led to even more congressional acts being passed that protected the rights of children with disabilities. Thanks to the Katie Beckett Medicaid Waiver, as well as other legislation, parents were finally given the choice to keep their children at home and seek newly established community services for their support, rather than place them in state run facilities. More and more of these institutions began to close, a process that is still ongoing today- yes, today, there are still institutions open in America.

In the end, more than twenty congressional acts were passed in consequence of lawsuits filed by parent organizations before President George Bush finally signed into law the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990.

But these laws are not the end all. They are the first of many necessary building blocks that must continue to be put into place to protect the rights of people with disabilities, and to keep them out of institutions. In 1999, the United States Supreme court said in a decision called Olmstead v. L.C. that persons with disabilities who live in, are “at risk” of living in, or are eligible for placement in facilities or institutions, have a right to live in the community. The court said that, under the ADA, “it is a form of discrimination to isolate and segregate persons in institutions when they can live like other people in the community and enjoy the benefits of society.”

But even more federal initiatives have been necessary in recent years to further promote equality and integration. President George W. Bush passed the New Freedom Initiative in 2001, and in 2009, the Department of Justice Civil Rights Division launched an aggressive effort to enforce Olmstead. Through a series of system-wide settlement agreements, the DOJ has expanded the understanding of Olmstead obligations from getting people out of institutions to assisting people to engage in community life. 

The advocacy of thousands of people in the past have led us to where we’re at today with the Home and Community Based Services (HCBS) final regulations, which is designed to “ensure that individuals receiving services and supports through Medicaid’s HCBS programs have full access to the benefits of community living and are able to receive services in the most integrated setting.”

There are no words to describe the depth of my gratitude for those who have come before me who have exhausted themselves in relentless advocacy for this vulnerable community- work that has blessed my life and the life of my daughter, who suffers from both Charge Syndrome, which includes blindness, deafness, and overall developmental delay, as well as Lennox-Gastaut Syndrome, which is a severe form of childhood epilepsy, in countless ways. I truly stand on the shoulders of giants.

But the work is not yet done. Supports must continue to be put into place that will allow children with disabilities to remain in their homes and adults with disabilities to remain in their communities. There are still those in positions of power who believe that people with disabilities belong in institutions, and because not all institutions have been closed, there is a ready system still waiting there to absorb this population back into the clenches of the hell that advocates have worked for decades to eradicate them from. 

One important factor that few people seem to talk about, but which continues to make this population vulnerable to re-institutionalization, is the financial burden that families of children with disabilities carry. It’s one thing for the Supreme Court to rule that children with disabilities should be allowed to live in their homes, but it’s another thing for those parents to be able to actually afford to take care of their children. 

There are many factors that go into this burden such as the cost of medication, medical supplies, adaptive equipment, accessible architectural features in their homes, and the need for adequate insurance coverage for therapy and medical bills. There are state funded services in place already that assist with many of these things (although much could be said about the web of bureaucracy that parents have to navigate in order to gain access to these services) but one of the most burdensome factors that families face is the need for daily care. Many children with disabilities, including my ten-year-old daughter, need constant daily care in order to survive.

Thankfully there is much discussion in the world today about the economic value of caregiving and how it should be more fully recognized. Melinda French Gates’ recent article in Time Magazine, organizations such as Bronwyn Hale Dearden’s Economic Equity for Moms, and books like Riane Eisler’s The Real Wealth of Nations all address how undervalued caregiving has been in our culture, and how important it is that policies are put into place that better support families when they face the inevitable: the birth of a baby, a difficult diagnosis, or an injured family member. Much emphasis is being placed on the need for a National Paid Leave plan in order to help employees keep their jobs in these circumstances, which efforts I wholehearted applaud, but there is a unique circumstance that many parents of children with disabilities are currently facing that is not getting national attention. And that is, for many parents their children’s caretaking needs prevent them from getting a job in the first place.

When my first child was born in 2006, I chose to become a stay-at-home mom, but intended to go back to work after my last child started kindergarten, never anticipating that she would be born with severe disabilities. The emotional and physical toll of her care delayed those plans, but I did take a job as a substitute teacher in 2017 when she was in first grade. However, that was the year signs of her epilepsy started manifesting themselves, which rendered me just about the least reliable substitute teacher my school district had likely seen. I would accept positions well in advance only to have to cancel the day of because of my daughter’s medical needs. She had a full-time Medicaid Waiver funded respite worker, but she was scheduled to work evenings, not days, and had other obligations that prevented her from dropping everything to care for my daughter so I could go to work. 

During those years when I thought I’d be working again but wasn’t, and money became tighter and tighter for our family, I often wished that my daughter’s Medicaid Waiver allowed parents to be their own child’s paid caregiver which would have allowed me to make an income while still being home to care for my daughter- which is where I was anyway, because despite having a full-time caregiver in place, the unpredictability of her medical needs prevented me from being even part-time gainfully employed. 

I was thrilled this past year when I was informed that, due to the pandemic, temporary measures had been passed in the state of Virginia which finally allowed parents to be their own child’s paid caregiver. And it has made all the difference for my family financially. Despite the wage being significantly lower than what I could be earning elsewhere, the extra money I have been able to earn has significantly reduced the financial burden my family carries. 

But I am speaking from the perspective of someone with a spouse who has steady, reliable employment. What about parents who don’t have a spouse’s income to rely on? Their children are the population that are most at-risk of being re-institutionalized. They are the population who the Supreme Court has said have a right to live with their families, but whose families are financially unable to support them. This is the reason why parents of children with disabilities must be given the option of being their own child’s paid caregiver on a permanent basis- not only in the state of Virginia, but nationwide.

The primary fact that should get the attention of legislators is that making this policy permanent would not cost even one more dollar. It makes no difference to the state budget if a hired caregiver is getting paid for a child’s approved Medicaid Waiver hours, or if the parent of that child is getting paid. But it would allow families to make the choice that best fits their needs and circumstances as they vary from year to year.

We cannot allow these children to fall through the cracks and, because of food, housing, and employment insecurity, end up back in institutions. If the DOJ has indeed expanded the understanding of Olmstead v L.C. from getting people out of institutions to assisting people to engage in community life, then allowing parents to be their own child’s paid caregiver must be a part of that assistance. For some families, it is the only way to keep their children out of state-run facilities. It is the only way for them to earn a wage and still be there for their vulnerable child.

Lest we forget…

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