December 2019, Vol. 5, No. 9
RAISE The Standard Newsletter
Raising the Standard for Young Adults with Disabilities
Technical Assistance and Resources for RSA-funded
Parent Training and Information Centers
“In the event of an emergency, an oxygen mask will be released from the compartment above you. Place the mask over your own mouth and nose before helping others.”
-  Airline safety information card
image of a dry, cracked, heart-shaped leaf on black pavement
The research is pretty convincing.

Family caregivers are less likely than non-caregivers to practice preventive healthcare and self-care. Regardless of gender, age, race and ethnicity caregivers struggle to attend to their own well-being while managing caregiving responsibilities. They report sleep deprivation, poor eating habits, failure to exercise, failure to stay in bed when they are sick, and postponement of or failure to make medical appointments for themselves. Family caregivers are also at increased risk for depression and excessive use of alcohol, tobacco, and other drugs.

In this edition of RAISE The Standard, we explore issues related to caregiving for teens and young adults with disabilities.
The Voices of Experience

The Utah Parent Center produced this 30-minute video featuring experienced moms of adults with disabilities. They explore three questions:

  • What are the biggest differences between having a child with a disability and having an adult with a disability?
  • How did you successfully navigate your child's transition to adulthood?
  • What are the most helpful tips you would give parents of individuals with disabilities?

A Single Dad’s Perspective

Matt, a single dad, shares his journey and the resources that are helping him parent his daughter with disabilities as she transitions from school to adult life.

Illustration of a magnifying glass

Caregiving for a teen or adult with disabilities can be an emotional roller coaster. Sometimes, the idea of “self-care” can feel like a bad joke.

Self-care is simply the practice of caring for yourself. It means protecting and safeguarding your own well-being, including your physical, mental, and emotional health. The only person who has the authority to decide what self-care means for you is YOU!
What is YOUR Self-Care Action Plan?

We like this fun video from "How to Adult." They remind us that "self-care is an attitude that says 'I am my own responsibility and I will honor that responsibility as I would anything else that is precious to me.' " They suggest having an action plan ready to go.

Picture of the US Bill of Rights title
Caregiver Bill of Rights

“I have the right. . . to take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of my relative.”

The Caregiver Bill of Rights reminds caregivers that they must seek help and take care of themselves.

Myths About Self-Care, Debunked

Myth #1: “Self-care means going to great lengths to maintain my physical appearance.”

While you certainly can go to great lengths to keep your hair, nails, and skin looking perfect, that is not necessarily self-care. If getting your nails done is relaxing and makes you feel good, that could qualify as self-care, but the moment you start to feel pressured (pressured to find time for that appointment, pressured to go when you don’t feel like it, etc.), it stops being self-care and starts being just another point of stress in your life.

Myth #2: “Self-care means ‘treating myself,’ so I should eat whatever I want and do whatever I want.”

One of the trickiest things about caring for someone is learning when to say “no.” For example, even if your dog really wants the chocolate you were eating, you still wouldn’t give it to him because you know chocolate isn’t good for him! The same idea applies to self-care—it’s about doing what’s best for you, and not just acting on your own whims. Sometimes, self-care means going to bed or getting yourself to work on time.
Simple Ways to Practice Self-Care

1) Treat Yourself Like Someone You Love - Take notice of the way you treat the people you love. Notice when you support them, show concern for them, and offer to help them. And then take all those caring gestures and offer them to yourself too! Treating yourself with love and respect is the foundation of self-care.

2) Improve Your Self-Talk - Self-talk is an area where we tend to be harsher on ourselves than on other people. The next time you catch yourself making judgments about yourself, stop and ask, “Would I ever say that to my best friend?”

If you don’t know where to start with improving your self-talk, try repeating one of these positive affirmations to yourself when you are feeling discouraged or down:

  • “I am strong and capable.”
  • “My hard work will pay off.”
  • “I appreciate challenges and what I learn from overcoming them.”

“A” is for Ambivalence

This honest, to-the-point A-B-C approach looks at the emotional side of caregiving. Writer Donna Schempp, LCSW, does not sugarcoat anything.

Many feelings come up when you are caring for someone day in and day out. After a while, the “negative” emotions that we tend to want to bury or pretend we aren’t feeling come up. Caregivers are often reluctant to express these negative feelings for fear they will be judged by others (or judge themselves) or don’t want to burden others with their problems.

Schempp reminds that emotions we try to ignore can be like a two-year-old who wants your attention: they will keep tugging at you until you stop and acknowledge them. They can show up as poor sleep, illness, trouble coping, depression, stress eating, and substance abuse.

This article will identify some of the common, often hard to admit, feelings that caregivers experience and offer suggestions for how to better cope with these feelings.

Let’s start with “ambivalence…”

Tools that Work icon wioth hammer and icon with screwdriver and wrench on yellow background
How Can You Trust a Caregiver?

Trusting your child to the care of someone other than a family member is a big step. It can be a leap of faith.

How do you get to the point of trusting them to do all the things they’re supposed to, especially when you’re not there?

Michael George is the co-founder of, an online community focused on providing families with caregiving expertise and coping solutions. His post on addresses this question.

wooden dice with letters spelling out "HELP"
Asking for and Accepting Help

Being able to communicate constructively is one of a caregiverʼs most important tools. When you communicate in ways that are clear, assertive, and constructive, you will be heard and get the help and support you need.

When people have asked if they can be of help to you, how often have you replied, “Thank you, but I'm fine.” Many caregivers donʼt know how to marshal the goodwill of others and are reluctant to ask for help. You may not wish to “burden” others or admit that you can't handle everything yourself.

Be prepared with a mental list of ways that others could help you. For example, someone could take the person you care for on a 15-minute walk a couple of times a week. Your neighbor could pick up a few things for you at the grocery store. A relative could fill out some insurance papers. When you break down the jobs into very simple tasks, it is easier for people to help. And they do want to help. It is up to you to tell them how.

Help can come from community resources, family, friends, and professionals. Ask them. Donʼt wait until you are overwhelmed and exhausted or your health fails. Reaching out for help when you need it is a sign of personal strength.

How to Ask for Help

  • Consider the personʼs special abilities and interests. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal preparation.
  • Resist asking the same person repeatedly. Do you keep asking the same person because she has trouble saying no?
  • Pick the best time to make a request. Timing is important. A person who is tired and stressed might not be available to help out. Wait for a better time.
  • Prepare a list of things that need doing. The list might include errands, yard work, or a visit with your loved one. Let the “helper” choose what she would like to do.
  • Be prepared for hesitance or refusal. It can be upsetting for the caregiver when a person is unable or unwilling to help. But in the long run, it would do more harm to the relationship if the person helps only because he doesnʼt want to upset you. To the person who seems hesitant, simply say, “Why donʼt you think about it.” Try not to take it personally when a request is turned down. The person is turning down the task, not you. Try not to let a refusal prevent you from asking for help again. The person who refused today may be happy to help at another time.
  • Avoid weakening your request. “Itʼs only a thought, but would you consider staying with David while I went to church?” This request sounds like itʼs not very important to you. Use “I” statements to make specific requests: “I would like to go to church on Sunday. Would you stay with David from 9 a.m. until noon?”
Resources icon - three books on a shelf
Family Caregiver Alliance has this searchable state-by-state resource for help for family caregivers.

RSA Parent Center Spotlight

New York State Transition Partners provides information and strategies to help young adults with disabilities and their families to access and navigate vocational rehabilitation and other public systems that can help with financial stability, meaningful employment, and post-secondary education.

The partnership is a collaboration of:

New York State Transition Partners is one of 7 RSA PTIs nationwide that provides various training and programming to youth/young adults with disabilities and their families, professionals, and other PTIs on the issues surrounding Youth Transition, the period of time between adolescence and adulthood. They are funded by the Rehabilitation Service Administration (RSA) under the Office of Special Education and Rehabilitative Services (OSERS), which is part of the US Department of Education.
Dr. Rachel Kallem Whitman at doctoral commencement/graduation
Dr. Rachel Kallem Whitman writes with honesty about the painful challenges of doing “what you are supposed to do,” while living with a mental illness.

“I have to acknowledge that part of understanding my bipolar is accepting that inevitably my hidden illness will break through. My job is to manage my mental health, which requires self-care and authenticity. It includes asking for help when I need it and taking a break when I feel my illness start to gnaw its way to the surface. It means I have to be kind to myself because this isn’t my fault.”

Conferences and Webinars
Mark Your Calendar

January 15, 2020, 2:00 PM EST
An Introduction to the New Vocational Rehabilitation Toolkit for Parent Centers
A RAISE Center Webinar.

March 15, 2020, 2:00 PM EDT
Making Youth Engagement Possible: Making Youth Engagement Easier For Parent Centers
A RAISE Center Webinar.

June 16-18, 2020
National APSE Conference
Denver, CO

July 20-24, 2020
Association on Higher Education and Disability (AHEAD) Conference
Palm Desert, CA

October 15-16, 2020
National Caregivers Conference, The Spirit of Resilience. Philadelphia, PA
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.
Executive Editor:
Peg Kinsell
Visit our Website:
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.
US Department of Education official seal
RAISE is funded by the US Department of Education to provide technical assistance to, and coordination of, the 7 PTI centers (RSA-PTIs). It represents collaboration between the nation's two Parent Technical Assistance Centers (PTACs) and the seven Regional PTIs.