Rights, accomodations & self advocacy • LGBTQIA+ • Turning 18
Additional considerations in transition planning
Rights, accommodations & self-advocacy
Americans with Disabilities Act (ADA) is a federal law that requires equal access to healthcare for people with disabilities, including people with autism. It says you have the right to receive medical treatment free of discrimination; you or your child cannot be denied medical care because of your or their disability. Knowing this right is the first step in promoting self-advocacy among autistic teens and young adults.
Making healthcare accessible is typically done by providing "reasonable accommodations". An accommodation is a modification that allows you or your child to participate in their healthcare the way a person without a disability can. Accommodations are not defined in the ADA. "Reasonable" is also not defined in the ADA though the law says modifications must be "feasible" and "plausible" and cause "undue hardship." The law is purposely broad since it is expected that accommodations will be handled on a person-by-person basis and could change depending on the setting and situation.
The following are examples of possible reasonable accommodations that can happen in healthcare:
- Sensory-friendly waiting areas
- Help with paperwork that needs to be completed, or an advance copy of it
- A schedule of the visit outlining what it will entail
- Extra time for communication during all aspects of the appointment
- Using a patient portal or an app to schedule appointments, get appointment reminders or request medication refills.
- If you do not use speech, a communication method that works for you. (Example: AAC device or American Sign Language (ASL)).
- Allowing a support person in the exam with you.
- Note takers or real-time transcription services.
If you need accommodations, talk to your doctor and/or their office staff, ideally before you have a visit. Learning how to communicate to have your or your child’s needs heard is another, lifelong self-advocacy skill. The following are a few tips that may make your request for accommodations more effective:
- Approach the doctor and/or their staff with a request to discuss accommodations.
- Explain the way(s) that your disability makes it difficult to get good healthcare. Give concrete examples.
- Give some ideas of possible accommodations. Ask if they would be possible and if the doctor or staff have other ideas that could work in their office or practice.
Additionally, you could create an Autism Healthcare Accommodations Report developed by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), funded by the National Institute of Mental Health, which outlines your needs and recommended accommodations.
The report is custom-generated after you answer some questions using their digital Autism Healthcare Accommodations Tool (AHAT). Access to that tool and a sample of the report, including an accompanying letter to give to your provider, are here. If you create this, is recommended you schedule a pre-appointment visit with your provider just to review this report.
Self-advocate tips for: LGBTQ+ autistic adults seeking medical care
By Zoysia Oaks, M.Ed., C.R.C.
A study published in the February 2020 from the Journal of Autism and Developmental Disorders revealed a wide range of health disparities among LGBTQ+ autistic adults, including high rates of mental health conditions, unmet needs for mental and physical healthcare services and even medical providers denying them services, compared to straight, cisgender autistic adults. With that in mind here are tips for LGBTQ+ autistic adults when seeking medical care:
- Before going to an appointment or procedure, write down or print out your concerns. If it gets too hard to talk, you can hand your questions and concerns to a provider.
- Providers should use your preferred name and pronouns. If they won't or if they tell you they can't, talk to someone in charge. Sticking up for yourself can be hard, but you have a right to be called by the name of your choice and to have people use the pronouns you want them to use.
- Several of these tips suggest talking to someone in charge. That can be difficult or anxiety-provoking. Most healthcare centers and hospitals have a social worker on duty or a "patient ombudsman" whose job is to help you advocate. A social worker or ombudsman can help you figure out your rights, complain if necessary and get the help you deserve.
- It would be nice if all healthcare providers were trained in autism and in LGBTQ+ issues. Unfortunately, this is not the case. While it isn't necessarily fair, you may have to explain what your autism means to you or what you need as an LGBTQ+ person. Thinking in advance about how you might explain what you need, what you can or cannot do and what strategies work for you can reduce the stress when you encounter a provider who does not understand yet. And you will likely make a difference for those coming after you.
- Lastly, you have the right to say no. Healthcare providers give us information and choices. Ultimately, your health treatments are your decision. If you ever feel pressured or uncomfortable about a health care decision, talk to someone you trust right away to get support.
Turning 18
After a person turns 18, informed consent, the right to make decisions about your own life, shifts into their hands — even if they may have developmental or mental impairments that make them incapable of making important life decisions.
After age 18, parents can no longer:
- Make medical decisions for their child.
- Decide where or how their child should live.
- Sign documents on behalf of the child.
- Receive medical updates from doctors without written permission from the child.
Specifically, the PCP and specialist talk to the adult patient, not the parents and caregivers. Health information and medical records are private and can’t be shared without the adult patient’s consent.
For autistic adults aged 18 and older: Making your own healthcare decisions
It is your right to make your own healthcare decisions. Participating in your healthcare transition planning is the first step to helping you make informed ones. That includes learning as much as you can about your medical history – your diagnosis, any co-occurring conditions, any medications you take and any allergies you have – and discussing these with your parent/caregivers and your medical team.
Ask questions and ask for more information or who or where you can learn more. In the next section, For parents/caregivers of autistic adults turning 18, read how they can obtain legal permission to continue to make decisions for or with you.
The Arc, a national community-based organization, advocates that people with intellectual and developmental disabilities must make many daily and major life decisions, just like people without disabilities, including talking to a health care provider about medical care. They have developed a guide, Making My Own Healthcare Decisions For People with Disabilities, can help you make, review and adjust a healthcare decision-making plan to share with your doctors and loved ones.
For parents/caregivers of autistic adults turning 18
Parents of children with disabilities will need legal permission to continue making decisions for them after age 18, even if the child is financially dependent on parents and/or resides in an assisted facility. State laws require the needs and wants of a disabled adult be considered as much as possible for every decision made about that individual’s living conditions and medical care.
If you feel that at 18, your child is not or will not be able to make important legal decisions on his or her own behalf, you may want to consider pursuing guardianship so that you can retain your ability to make such decisions for him or her.
Ultimately, an Order of guardianship or conservatorship terminates or severely limits the ward’s rights and freedoms. State laws require that less restrictive alternatives are explored before guardianship or conservatorship is ordered. Some alternatives include Power of Attorney - a grant of shared authority by one person (the principal) to another (the agent or attorney-in-fact) to make decisions regarding finances or health care – and Representative or Protective Payee – a person appointed to manage benefits like Social Security.
You can learn more about guardianship, conservatorship and power of attorney plus the financial implications in the following:
Family ECHO: Autism, a virtual training series developed with Nationwide Children’s Hospital of the ACNet. The episode “The Second Act” includes a discussion on healthcare, including legal considerations with guardianship and power of attorney, and coproducing care with your medical team. Find and register for upcoming sessions here.
Changes to SSI Eligibility
If you or your child received SSI benefits before turning 18, the standards under which they receive those benefits change Before 18, the Social Security Administration (SSA) attributes part of both parents’ (legal guardians’) income to their child’s resources to determine their child’s eligibility. Upon the child’s 18th birthday, the parents’ income is no longer considered when determining the means-based eligibility limits.
This handout from the University of Massachusetts Medical School outlines if you can keep your SSI after 18, if you can work without having your SSI check amount reduced. If it is determined you are no longer medically eligible for benefits after the age 18-redetermination, your benefits may continue if you are participating in an approved program of special education, vocational rehabilitation (VR), or similar services.
Some examples of appropriate programs include:
- An Individualized Education Program (IEP) for a youth who is between ages 18 and 21.
- A VR agency using an individualized plan for employment.
- Support services using an individualized written employment plan.
- A written service plan with a school under Section 504 of the Rehabilitation Act.
- An approved Plan to Achieve Self-Support (PASS).
For additional information, read What you Need To Know About Your Supplemental Security Income (SSI) When You Turn 18.
