[Note: this post and presentation both mention abuse and violence against people with disabilities.]
Recently, I had the opportunity to present at the AAC in the Cloud Conference! For my session, I focused on the importance of autonomy and safety in home and community-based services.
YouTube link to the presentation:
Transcript of main presentation for Deaf/Hard of Hearing friends, after basic introduction:
“Home and community-based services are essentially supports that help people with disabilities live in the community instead of an institution. These supports vary based on what the person needs.
Common ones are support for activities of daily living, accessing transportation, assistive technology, respite, and self-advocacy programs. They’re under the umbrella of long term supports and services, generally through Medicaid. The supports offered and enrollment vary by state, and there are often very long waiting lists and shortage of services.
Olmstead v. L.C.
When we talk about these services, it’s important to mention the Olmstead Supreme Court decision in 1999.
This decision essentially established that people with disabilities deserve to live in the most inclusive place that suits their needs. It’s similar to the least restrictive environment practice in our IEP processes in education.
We have two women with disabilities to thank for this ruling – Lois Curtis and Elaine Wilson. They had been confined to institutions for a long period of time, despite being able to thrive in community settings with supports. As someone who relies on these services, I am very grateful for them.
Autonomy and Self-Determination
Autonomy and self-determination aren’t just popular buzzwords that appeared online overnight.
These concepts play a major role in supports and empowerment for people with disabilities.
Autonomy is essentially having the ability to have control of your life. It means that we are allowed to have boundaries, and that we get a say in our everyday lives.
Self determination is similar. It’s being able to make and choose your own goals and priorities. It‘s allowing for the dignity of risk, where people allowed to take risks, make mistakes, and learn from them.
This is the foundation for concepts such as person centered planning and supported decision making.
AAC and Direct Support Professionals
Direct support professionals are the backbone for home and community-based services. They help people with disabilities and their families directly, providing the necessary services that ensure they’re getting the supports they need.
We know that AAC requires a team approach, and direct support professionals can also play a role in this. Some ways to support them is by training on AAC, making sure light tech is available, and modeling for them. We hear a lot about modeling for AAC users themselves, but sometimes professionals benefit from being modeled to as well!
Negative Experiences and Abuse
This one is a tough topic, but it’s important.
Although abuse is generally less likely to occur in home and community based settings compared to institutions, there is always a risk – especially since abuse is often perpetrated by a known person with a power imbalance.
The statistics are concerning, as people with disabilities are significantly at a higher risk of trauma. This is partially due to being seen as an easy target, being isolated from safe support systems, and uneven power dynamics between disabled people and non-disabled people.
I have personally had several negative experiences, ranging from medications not being managed to sustaining a traumatic brain injury due to negligence. I’ve been left alone while support workers go Christmas shopping, have been stranded in public places, and called inappropriate things such as the r word. I also had a caregiver steal my ladle and flush my living pet fish, but that’s a story for another time.
Positive Experiences with Support Staff and AAC
Despite the negative experiences, I have absolutely wonderful support workers these days – which is honestly a relief. I feel safe and accepted because they focus on seeing me as a human being.
All of my communication is respected, whether it’s through my device or gestures and noises. They respect my boundaries, especially my preferences in how I see my AAC as an extension of myself and my voice.
They also help back me up when dealing with professionals who are either dismissive or don’t treat me as competent. I’ve had caregivers who refuse to make eye contact with doctors and look at me – which forces the doctors to talk to me directly. The fact that my support staff always presume competence is very important to me.
Not only this, but they honor the silence in my communication. I don’t feel rushed or pressured to respond faster, and that means I’m able to actually communicate clearly and accurately
Safety Considerations and Possible Suggestions
This is a big one.
A lot of families have worries about safety when it comes to loved ones who use AAC. There’s fears of abuse, withholding communication access, and more.
There are some ways to help support safety for AAC users, such as safety skills, regular conversations on consent, asking specific questions, and ensuring a larger support circle. It’s harder to take advantage of someone when they have multiple people they can trust.
As data tracking/history of AAC use can be very controversial, one way to check for the restriction of communication access is to check the screen time settings on devices. This encourages privacy for the AAC user while also giving access to whether or not they actually are able to use the device.
AAC and Safety
Many people don’t want to give AAC users access to words that are considered more inappropriate – but if their peers have access to the language, they should too.
It’s actually recommended for children to have access to anatomically correct terms for their bodies, because it allows for kids to be able to better report abuse and understand if something isn’t okay. It also makes children feel less embarrassed or ashamed when telling a trusted adult, because the topic is more normalized.
Despite this, AAC users are often denied access to appropriate sexual education and consent. We are often seen as perpetual children and people often consider us unable to understand these things – which puts us at even higher risk.
The Power of No
Continuing from this, children with disabilities are often taught that they should not say no to authority figures. It’s seen as a sign of respect or behavior. While being respectful and polite is very important for anyone, never being allowed to assert boundaries is a major problem.
Overly compliant children are at a higher risk of becoming traumatized adults.
AAC users need the ability and opportunity to refuse, decline, and express negative emotions. We aren’t robots; we are human beings with thoughts and feelings. This is especially true for children who are struggling with emotional regulation. Kids do well when they can, and being able to communicate frustration can decrease distress for everyone.
Self-Advocacy Scripts
One of the perks of AAC is being able to save phrases and scripts. When someone is in an extremely stressful situation, they’re more likely to struggle with finding the words they need – and communication might be either unreliable or even impossible. While scripts are especially helpful for us gestalt language processors, everyone benefits.
To have access to these scripts allows for quick access to self advocacy.
Some examples include phrases such as “I’m not okay with that” or “leave me alone”. Some people also include safety and contact information, conversation starters, and reassuring questions.
Self-Advocacy Page Example
This is an example of my self-advocacy page on TD Snap. I also use AssistiveWare apps as well, but this is first one I remembered to screenshot for the presentation.
You can see several different buttons that express personal preferences, feelings, and assertive phrases. You’ll also notice that there are folders dedicated to snark and swears, which is also an effective way of self advocacy. Calling someone an unfrosted pop tart isn’t necessarily polite, but sometimes you can only handle so much.
Takeaways
If there’s anything to be taken away from this session, it’s the importance of training for direct support professionals, the necessity of autonomy and self determination, and access to as much communication as possible.”
Sources and Resources
- Medicaid.gov – Home and Community Based Services
- OlmsteadRights – About Olmstead
- The Arc – Home is in the Community
- West Virginia University: Center for Excellence in Disabilities – Self-Determination
- LifeCourse Nexus – Foundational Tools: Person Centered
- Accessing Home and Community-Based Services: A Guide for Self Advocates
- National Council on Disability, Association of University Centers on Disabilities, and the National Center for Victims of Crime – Breaking the Silence on Crime Victims with Disabilities
- Prevalence and risk of violence against adults with disabilities: a systematic review and meta-analysis of observational studies
- EnoughAbuse.org – Straight Talk About Child Sexual Abuse: A Prevention Guide for Parents of Children With Disabilities
Just Keep Stimming! 
I love this so much! Thank you for sharing the screen shot. My husband has a severe TBI and we’re looking at devices for him. We have teens I’m trying to empower…and I struggle to assert myself…so I love this in many way. Thank you!
LikeLike