RAISE The Standard, August 2022, v.8 n.7 | |
Health and Wellness
Disability and good health can go together! Being healthy means the same thing for everyone—getting and staying well so we can lead full, active lives. That requires having the tools and information to make healthy choices and good decisions, and knowing how to prevent illness.
In this issue of RAISE The Standard, we look at health, well-being, and how adults can help to empower youth to take charge of their bodies and minds.
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Take Time to Press Pause
Mental health advocate Tessa Zimmerman knows from firsthand experience that teachers are “first responders” to their student’s mental health challenges, but often lack the time and training they need.
In this short TEDx Talk, she points to the power of changing the question from “Are you OK?” to “What are you feeling right now?”
This simple shift can help young people develop skills to identify their feelings and learn “bite-sized” tools to self-regulate.
Click here to watch Tessa Zimmerman’s TEDx talk.
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#TOOLSFORTOUGHTIMES
Check out ASSET Education's “Tools for Tough Times.” Visitors can scroll down to find a bank of more than 30 two-minute teen-led videos teaching simple, portable stress and anxiety reduction tools.
Visit the Tools for Tough Times page now.
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Getting the Most Out of Your Medical Appointments
For youth to take an active role in their health care, they need skills, information, and a framework for communicating with medical providers. We turn to the American Academy of Family Physicians for some tips:
1) PLAN. Before your appointment, think about your concerns and questions. Write them down and bring them to your visit. You might want to arrange your list by what is most important to you.
2) PRIORITIZE. At the beginning of your visit, tell your medical provider about the most urgent or important issues for you.
3) BE HONEST. Share truthful information about lifestyle, drug and alcohol use, relationships, and other aspects of your life. Detailed information helps a medical provider get a more complete picture of your overall well-being and consider lifestyle factors that might affect your health.
4) DON’T BE SHY. Your medical provider has heard everything before and is here to help you. Don’t be afraid to talk about a pain or a feeling that bothers you, even if it’s embarrassing.
5) USE YOUR ACCESSIBILITY TOOLS. If you use hearing aids, glasses, augmentative communication devices, or other tools, use them at the visit so that you can communicate with your medical provider as well as possible. If you have other accessibility requirements, try to arrive early so that your needs are accommodated, and you won’t be rushed.
6) ASK QUESTIONS. If you do not understand something your medical provider says, ask them to explain it in greater detail, possibly using pictures or brochures. Don’t be embarrassed to ask them to repeat the same thing, more slowly. Here are some good starter questions:
- What do my symptoms mean?
- What tests might I need?
- What caused this condition?
- How serious is the condition?
- What are the treatment options?
- Are there any side effects to the treatment?
- How long will treatment take?
- How will this condition affect my life now and in the future?
- What can happen if I don’t get the treatment?
7) FOLLOW UP. If you have other concerns, make a plan with your medical provider for how to address them later.
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Health Literacy
Is “health literacy” in your student’s IEP? It should be. In order to take charge of health and wellness, youth need to learn the “language of health care,” and know how to access and understand the health care system.
Q: What is health literacy?
A: Personal health literacy is the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others. Organizational health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
Q: Why does health literacy matter?
A: People with disabilities experience significant health disparities from typically abled people, including worsening health, depressive symptoms, diabetes, stroke, visual impairment, difficulty with activities of daily living, obesity, lack of physical activity, and low workforce participation. In addition, many people with disabilities do not receive basic primary and preventive care, including weigh‐ins, preventive dental care, pelvic exams, X‐rays, physical examinations, colonoscopies, and vision screenings. The Center for Disease Control (CDC) estimates that inadequate health literacy is associated with annual health care expenditures approximating $172 billion.
Q: What are the problems?
A: One of the biggest barriers—faced by people with and without disabilities alike—is that health information is too complex. According to a paper by the AAHD, 9 out of 10 adults struggle to understand unfamiliar health information. According to the CDC, health professionals often use too much jargon or scientific data, and rely too much on printed information. Often, there is a lack of diversity in the message delivery methods, and too much focus on conveying information rather than encouraging actions on the part of the patient.
Q: What can be done to improve health literacy?
A: Every organization responsible for disseminating health information should take an inclusive approach when developing and disseminating information about health issues. Providers can take time to learn more about effective communication with diverse populations, including people with learning, intellectual and developmental disabilities. (See the Resources section for an article from the CDC)
Schools can do their part by providing direct instruction in health literacy and including goals and objectives in transition IEPs for students ages 14 and over.
Navigating the Health Care System is a four-unit health literacy curriculum. Designed by Nemours Children’s Health, it helps prepare teens to be responsible for managing their health care. The curriculum is available nationwide at no cost, with new content added regularly. The four-module lesson plans include a facilitator’s guide and interactive web-based activities.
Click here to access the Nemours Children’s Health curriculum, Navigating the Health Care System.
How can teens take charge of their medical care? Check out the English and Spanish versions of Nemours Take Charge resources:
How Can I Take Charge of My Own Medical Care? in English.
¿Cómo puedo hacerme cargo de mi propia atención médica? en español.
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Medical Decision Making
Decision-making is at the heart of self-direction and self-advocacy, and nowhere is that more important than decisions about health. Informed consent is the foundational ethical principle that a person should have a right to decide what is to be done with their body.
According to the American Medical Association, respect for patient autonomy is vital. Doctors should involve patients in health care decisions to the maximum extent possible. Even when a patient has a disability or condition that might limit their decision-making capacity, the patient can often participate in some aspects of decision-making. The following Q&A is not legal or medical advice; rather, it is intended to help advocates understand the key terms and principles in medical decision-making:
Q: What is “Basic Consent”?
A: Basic Consent is the term used when a medical professional tells a person what they want to do to them, then asks if they are all right with it. Basic consent is NOT informed consent. Often, a patient will agree—even if they do not understand the procedure, risks, or alternatives— simply because it is what the doctor or another person in authority wants.
Q: What is “Informed Consent”?
A: Informed Consent is a process of communication. Using language the person understands, and in a format that is fully accessible to them, the medical professional informs the patient about the risks, benefits, and alternatives of a particular action, treatment, or service. The steps are:
- Describe the action, treatment, or service.
- Explain the individual’s role in the decision-making process.
- Discuss the possible alternatives to the proposed action, treatment, or service.
- Provide information about the potential risks of the action, treatment, or service.
- Check to be sure the patient understands.
Q: What is “capacity”?
A: In order for a person to consent, they must have the capacity to make a voluntary decision about whether or not to undergo the action, treatment, or service. They must be able to understand the benefits and risks of, and the alternatives to, a proposed treatment or intervention (including no treatment).
Q: What happens for people who do not have “capacity”?
A: Individuals who do not have the capacity to provide informed consent still have the ability to provide important background information. They can also state their preferences regarding care options. They can be involved in some way.
Q: What is supported decision-making in health care?
A: According to the National Disability Rights Network (NDRN), supported decision-making can be used to help people with disability make or communicate a decision. Trusted friends, parents, or advocates, called “supporters,” can assist the person with a disability in any type of decision, including medical decisions. For example, a person with a disability can talk to the supporter about the benefits and risks of medication or a certain test or procedure. The supporter can explain complex medical language or medication side effects. If the patient cannot communicate clearly to a medical provider, the supporter can help.
Q: How does supported decision-making work in health care?
A: A supporter can assist a person with a disability by:
- Going with the person to a doctor’s appointment
- Assisting the person as they complete paperwork at the doctor’s office
- Explaining the medical or health insurance terms to the person
- Helping the person remember their past or current illnesses and symptoms
- Assisting the person to get copies of their medical records
- Helping the person understand their medical records
- Discussing the benefits and side effects of taking a drug with the person
- Helping the person decide on medical treatment
- Assisting the person as they communicate with a doctor, nurse, or other clinician
A supporter could do other things, depending on the person’s needs and the situation.
Want to learn more?
View a short video on supported decision-making in health care and medical treatment decisions.
Check out this family resource on supported decision-making from the National Disability Rights Network.
Check out the Adult Advocacy Center's Guide to Informed Consent for People with Disabilities.
Click here view The American Medical Association's (AMA) page on medical decision-making for those who lack capacity.
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An Advocating Momma
Domonique Howell is a passionate advocate for health care access, equity and quality. She writes about her experience with “subpar prenatal care” as a full-time wheelchair user.
“…the medical professionals assumed that I would not be able to physically take care of my child… With their discriminatory medical recommendations, the Department of Human Services was called and thought it best that my child be taken from me at birth and put into the child welfare system. Thankfully, I was able to self-advocate and have informal support in order to stop this from happening.”
Click to read Domonique Howell’s full story on medical advocacy.
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In this issue of RAISE The Standard, meet Midwestern Collaborative (Pathfinder of ND). The Midwestern Collaborative brings a unique opportunity for eight Parent Training and Information Centers (Iowa, Kansas, Missouri, Montana, Nebraska, North Dakota, South Dakota, and Wyoming) to explore, create, and celebrate statewide services that focus on the development of self-advocacy, self-discovery, and independence for youth with disabilities. Working closely with professionals from Vocational Rehabilitation Centers and Centers for Independent Living, the Training and Information Centers offer collaborative and innovative services that guide youth with disabilities and their families to services centering on secondary transition and life after high school.
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Collaboration • Empowerment • Capacity-building | |
RAISE The Standard enewsletter identifies and shares resources that the Rehabilitation Services Administration Parent Training and Information Centers (RSA-PTI) can use and share with families. | |
The RAISE Technical Assistance Center is working to advance the accessibility of its digital resources, including its websites, enewsletters and various digital documents. | |
RAISE, the National Resources for Access, Independence, Self-Advocacy and Employment is a user-centered technical assistance center that understands the needs and assets of the RSA-PTIs, coordinates efforts with the Technical Assistance provided by PTI centers and involves RSA-PTIs as key advisors and partners in all product and service development and delivery. | |  |
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The RAISE Center is a project of the SPAN Parent Advocacy Network and is funded by the US Department of Education's Rehabilitation Service Administration. The contents of this resource were developed under a cooperative agreement with the US Department of Education (H235G200007)). However, the contents do not necessarily represent the policy of the Department of Education and should not assume endorsement by the federal government.
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