Caroline is Part of Your World by Ann Jeannette Pierce
A beautiful young woman with sky-blue eyes and coal black hair reclines against propped-up pillows on her bed listening to Ariel sing Part of Your World. She wiggles a white, men’s tube sock in front of her face, pausing every few minutes to pull and unravel a long thread from it which she rolls into a tiny ball between her thumb and forefinger. I want to be where the people are. The Little Mermaid is her favorite Disney movie. Out of the sea, wish I could be part of your world. This is her day
This young woman has Level 3 autism—the most severe level. It is marked by rigidity of daily routine, repetitive behaviors, and communication deficits. This young woman is nonverbal. She has never asked a question—the very thing that allows us to learn. She can’t tell you what she is thinking or how she feels. She can’t tell you her problems. She is not like Elon Musk, Dan Akroyd, the Good Doctor, or even Rain Man. She is dependent on others for all her needs—bathing, dressing, food preparation, and yes, for wiping her bottom on the toilet. She is helpless and vulnerable. She is 32 years old but like a small child.
This young woman lives in a Medicaid-funded Supports for Community Living (SCL) home. These homes were created as an alternative to institutional living for people with intellectual and developmental disabilities. All states have these small group homes. There could be one in your neighborhood. They are operated by private providers who are responsible for following 62 pages of SCL regulations. The rules are good but easily fall apart at the point of care. Each provider is responsible for hiring caregivers. These caregivers are hard to find and paid so little. While some truly feel the call to this work, others are just not cut out for it.
Because this young woman is dependent on others for everything, and because she has been unable to learn the concept of waiting, she scratches and cries if her wants and needs are not met immediately. Trying to understand what she wants and needs is sometimes impossible. Sadly, she is often bruised: large bruises to the tops of her feet that look as if someone stomped on them, fingertip bruises to her arms, bruises to her wrists, bruises to her chest and the insides of her hips, and large bruises to the backs of her legs that look like someone kicked her from behind, and even a busted jaw and a black eye; all of which are unsubstantiated by state investigators because she cannot talk and tell what happens to her. (A hematologist confirms she does not bruise easily. A neurologist confirms she is not prone to falling.)
It is probable that some of this young woman’s caregivers are not called to this vocation and are responding in anger to her attempts to scratch them. They have referred to her as evil, demon-possessed, and attacking them. A state investigator even wrote in her report that this young woman is a bully. These attitudes indicate a serious misunderstanding of severe autism, and may justify for them actions taken in response to this young woman’s innocent attempts to communicate her distress. A retired CEO of a facility which is home to people with cerebral palsy writes:
A large percentage of issues involving residence staff abuse of service residents are due to staff trying to deal with what they see as a “behavior problem” of the resident. The staff member sees a need to control or change the behavior. In trying to control or change the person’s behavior, the staff member themselves loses control. You then have a situation where the staff is using “out of control” or emotionally disturbed behavior to try to deal with what they perceive as out of control behavior—and the situation just escalates.
Sadly, this young woman’s situation is not unique. According to the Disability and Abuse Project survey:
A total of 70% of those individuals with developmental disabilities in group homes have been neglected, assaulted, or otherwise physically or sexually abused. More than 50% of these individuals reported suffering physical abuse and 41% reported sexual abuse.
These numbers are appalling. And they don’t include those individuals who are unable to communicate or who are afraid to speak up.
The U.S. Department of Health and Human Services, the Office of the Inspector General, the Administration on Community Living, and the Office of Civil Rights filed a Joint Report which states:
Injuries, serious medical conditions, and even deaths of those with developmental disabilities living in group homes often are not looked into and go unreported, federal investigators say. An audit of three states found that officials routinely failed to follow-up on incidents ranging from head lacerations to loss of life in violation of federal and state policy. The issues are believed to be systemic affecting people with disabilities residing in group homes across the country.
(sigh)
Back to the beautiful young woman with the sky-blue eyes and coal black hair. She has a thing called Exceptional Supports. This means she has a one-on-one caregiver and is under 24-hour supervision. And, yet, she is repeatedly injured without explanation as to how her injuries occur.
This is why Senator Reginald Thomas (D), Minority Caucus Chair, introduced Senate Bill 173. This bill gives parents the right to place a camera in their child’s private residential room. A camera will not only identify abusers and allow for their removal by providers in order to keep their tenants safe, but will also exonerate innocent staff. Providers should not only welcome cameras, but insist on them. Yet, the providers association as well as the nursing home association oppose cameras and are lobbying against this bill. Here are their objections:
1. Staff will use cameras to sexually exploit residents.
- Response: Staff already has this capability with their cell phones.
2. Guardians will choose cameras without consent of resident.
- Response: This statement questions the wisdom of judges in determining court-appointed guardianship.
3. Providers cite arduous rules of compliance, fear of frivolous lawsuits, and further complication of staffing difficulties.
- Response: Providers are disregarding potential danger to their residents.
4. Cameras don’t stop abuse.
- Response: Tragically, this is true. But cameras identify abusers and allow for their removal.
5. What is to prevent staff from turning off a camera?
- Response: Nothing. However, missing camera footage accompanied by signs of abuse is incriminating.
6. What is to prevent staff from abusing individuals outside of the home where a camera will not see?
Response: Nothing. Nor is there anything to prevent staff from bringing unauthorized visitors into the home. Vulnerable people are totally at staff’s mercy. This vulnerability needs to be addressed.
7. Cameras violate the right to privacy.
- Response: Some people, because of the nature of their disability, are unaware of privacy. Their disability requires 24-hour observation. They are seen naked every day. If privacy is still an issue for you, please remember, many are unable to communicate. Cameras are a necessary component in their plan of care to speak for them and to provide them security. People also have the right to safety. Safety takes precedence. camera legislation and still receive federal funding.
8. Because of the HCBS Settings Rule, if you pass a camera bill, you will lose federal funding.
- Response: There is no HCBS Settings Rule against cameras in private residential rooms. In fact, the rule stresses the right to choice and person-centered planning. The Guiding Principles of Person-Centered Planning states: provide safeguards to ensure personal security, safety, and protection of legal and human rights. Other states have passed camera legislation and still receive federal funding.
To add insult to injury, some, not all, but some Republican Senators say they will never vote for any bill introduced by a Democrat. And some Democrats say the same about Republican bills. Will these Kentucky lawmakers sacrifice people in pursuit of spite? Will lawmakers who are charged with bettering the lives of all Kentuckians allow these atrocities to continue because of party affiliation?
THIS IS NOT A PARTISAN ISSUE!
PROTECTING VULNERABLE PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES IS THE RIGHT THING TO DO!
Your Senator, Robert Stivers (R), Senate President, has tremendous influence on the Republican Majority of our Kentucky Assembly. He can help but he needs to hear from you, his constituents.
Your voice is important and necessary. Please, speak for those who have no voice.
You may email him at and tell him about what you have just read and how the need for Senate Bill 173 is urgent. And you may call 1-800- 372-7181 and vote YES for Senate Bill 173. You can ask for your vote to be sent to all legislators. It takes two minutes at the most to make this call.
Your email and phone call will help prevent so much suffering for so many. Please, be a part of their world.
Notes
The Disability and Abuse Project is a collaboration effort by Dr. Nora Baladorian, Ph.D and Marc Dublin, Esq. Dr. Baladarian has been a trailblazer in the fight against abuse of persons with disabilities, and Marc Dubin, a former Senior Trial Attorney at the Justice Department, has extensive expertise in enforcing the Americans with Disabilities Act nationwide.
Ann Jeannette Pierce lives in Owensboro, Kentucky. Her daughter has severe and profound autism. Ann Jeannette says, I was so happy when my daughter was born that I named her Caroline which means “Song of Joy.” It is a cruel twist of fate that she has suffered a lifetime of being left out of what we consider normal—no dance lessons or soccer practice, no learning to ride a bike or swing, no graduations, no boyfriend, no wedding, no children of her own, no anticipation of birthday or Christmas gifts, none of the joys you and I experience. And yet, she laughs…and she cries. She IS a part of our world.
For more information about severe and profound autism, please visit the National Council on Severe Autism website www.ncsautism.org or Facebook page.
