July 2019, Vol. 5, No. 6
RAISE The Standard Newsletter
Raising the Standard for Young Adults with Disabilities
Technical Assistance and Resources for RSA-funded
Parent Training and Information Centers
"Independence is personal, internal, and ever-changing, and everyone’s idea of it is subjective."

- Jennifer Burgmann
What does independence mean? It depends on whom you ask. In this issue of RAISE The Standard, we offer perspectives from students, adults, and parents about what independence means to them:
"Like all of us, I wanted to do more."

- Corliss Lennon, self-advocate

"I want to try to do it myself."

- Amy, student and self-advocate

"Yes, my child must fall before he can soar."

- Stacey Gagnon, parent

"I want to pee alone."
- Loula Desu, self-advocate

"Our challenge now is knowing when to hold her hand and knowing when to let her fly."

- Becky Carey, parent

"I've come to realize that independence is not a physical state, but rather a state of mind."

- Jennifer Burgmann

Scale showing "Provide Support" balancing with "Encourage Independence"
Building Independence:
Let Your Teen Grow

We love the positive message offered by Rosemary Alexander, PhD, Director of the Texas Parent To Parent:

When our children are babies and toddlers, it’s natural for us as parents to be a constant helpful presence in their lives. But parents of children with disabilities can find it especially hard to let their children do more things on their own as they get older. That’s why when they are still young it can be helpful to think about how we can gradually help them become more independent.

We are not just preparing the way for them. We are also mentally preparing ourselves to take a step back and let our children explore new things or try new challenges. By confronting our fears and practicing positive steps, we can make the transition easier for ourselves and our children.

Things to ask yourself

  • What is challenging about letting a child who has disabilities or vulnerabilities grow up? What are your fears or worries about it? How have other parents in similar situations handled it?
  • Are there small steps you can take now to encourage your child's independence? What are they? How would it feel to try some of them?
  • How can you continue to grow and change in your role as parent? How would that help your child, yourself, and your family? What might stand in your way, and how will you work to overcome those challenges?

Positive steps to practice

  • Recognize your child's strengths, talents, and interests and work to build on them for the future.
  • Try to understand how other people see your child and learn from that—they may see strengths you can’t see.
  • Despite your child’s disabilities, set expectations for her to be a contributing member of your family. Give her chores at home, like the other members of your family. Treat her like the other children in the family as much as possible.
  • Don't underestimate your child's normal desire to grow up and move on.
  • Don't confuse your own needs with your child's needs; sometimes a child is actually ready for the next step, and it’s the parent who is afraid of moving forward.
  • Find opportunities to let your child make choices about little things.
  • Let your child know that you are there for her for as long as she needs you, but that you hope and expect your child to learn to become as independent as possible.

Universal Design as a Pathway to Independence

"When we design for disability first, you often stumble upon solutions that are better than those when we design for the norm."

- Elise Roy

In this TED talk, design thinker and disability rights attorney Elise Roy offers insight and ideas as she talks about Universal Design.

“Solving challenges related to access for people with disabilities isn’t as simple as a drop-down menu.”

- Sarah Houbolt

Sarah Houbolt talks about Universal Design and how it can increase independence—and interdependence.

silhouet-style graphic of street scene with diverse group of people
What is Universal Design?

Universal Design (UD) is an approach to design (and teaching) that increases the potential for developing a better quality of life for a wide range of individuals. It refers to the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. UD can dramatically increase independence because fewer supports and accommodations are needed when design considers ALL users from the beginning.

It is a design process that enables and empowers a diverse population by improving human performance, health and wellness, and social participation. There are seven principles:

1) Equitable Use - The design is useful and marketable to people with diverse abilities.

  • It provides the same means of use for all users: identical whenever possible; equivalent when not.
  • It avoids segregating or stigmatizing any users.
  • Provisions for privacy, security, and safety are equally available to all users.
  • The design is appealing to all users.

2) Flexibility in Use - The design accommodates a wide range of individual preferences and abilities.

  • It provides choice in methods of use.
  • It accommodates right or left handed access and use.
  • It facilitates the user’s accuracy and precision.
  • It provides adaptability to the user’s pace.

3) Simple and Intuitive Use - Use of the design is easy to understand, regardless of the user’s experience, knowledge, language skills, or current concentration level.

  • It eliminates unnecessary complexity.
  • It is consistent with user expectations and intuition.
  • It accommodates a wide range of literacy and language skills.
  • It arranges information consistent with its importance.
  • It provides effective prompting and feedback during and after task completion.

4) Perceptible Information - The design communicates necessary information effectively to the user, regardless of ambient conditions or the user’s sensory abilities.

  • It uses different modes (pictorial, verbal, tactile) for redundant presentation of essential information.
  • It provides adequate contrast between essential information and its surroundings.
  • It maximizes “legibility” of essential information.
  • It differentiates elements in ways that can be described (i.e., makes it easy to give instructions or directions).
  • It provides compatibility with a variety of techniques or devices used by people with sensory limitations.

5) Tolerance for Error - The design minimizes hazards and the adverse consequences of accidental or unintended actions.

  • It arranges elements to minimize hazards and errors: most used elements are most accessible; hazardous elements are eliminated, isolated, or shielded.
  • It provides warnings of hazards and errors.
  • It provides fail-safe features.
  • It discourages unconscious action in tasks that require vigilance.

6) Low Physical Effort - The design can be used efficiently and comfortably and with a minimum of fatigue.

  • It allows the user to maintain a neutral body position.
  • It uses reasonable operating forces.
  • It minimizes repetitive actions.
  • • It minimizes sustained physical effort.

7) Size and Space for Approach and Use - Appropriate size and space is provided for approach, reach, manipulation, and use, regardless of the user’s body size, posture, or mobility.

  • It provides a clear line of sight to important elements for any seated or standing user.
  • It makes reaching toward all components comfortable for any seated or standing user.
  • It accommodates variations in hand and grip size.
  • It provides adequate space for the use of assistive devices or personal assistance.

Design for Everybody

“Rather than obsessing on door widths and ramp slopes in a vacuum, designing projects for everyone from the start simply makes more sense. Universal design is not about designing separate but equal spaces but about design equality. Projects that comply with the letter rather than the spirit of the law mean missed opportunities to design for everyone.”

Want to take a deeper dive into how UD can increase independence in office spaces, doctors’ offices, buses and trains, cities, and even public parks? 

graphic of several brightly colored houses small and large
Housing for Independence

Centers for Independent Living are a consumer-controlled, community-based, cross-disability, nonresidential private nonprofit agency. They are designed and operated within a local community by individuals with disabilities and provide an array of independent living services. They offer a wide range of support for youth.
Join Allie Cannington and Keri Gray for this recorded webinar on the Role of CILS in the Lives of Youth. Watch the webinar now >>

Want to connect with a CIL in your area? Find a CIL now >>

Housing is a big part of independence and CILs can help. Learn more >>

Check out this on-demand training program offered through CIL,
Expanding Housing Options in Your Community. Watch now >>
For more on the topic of housing, we turn to PACER National Parent Center on Transition and Employment. PACER's video, " Housing: Starting the Journey," can help get the housing planning process started with an eye towards person centered planning .

Here's PACER's youth-friendly (and funny) take on youth transition to independent housing...

Most parents aren’t sure how to begin planning for their son’s or daughter’s transition to independent living in the community. The PACER Center’s hour-long video presentation, "Housing, First Steps Towards Independent Living," is designed for parents and can help.

The video provides an overview of available housing and services options and person-centered planning concepts to help their son or daughter develop a vision for independent living, housing, and services.

Clock dial with words Time to Share and hand drawing them
Communities of Practice

Sometimes, the best way to make your point is to share your ideas with other like-minded individuals. The DO-IT Center at the University of Washington offers online Communities of Practice (CoPs) for multiple stakeholder groups. Communicating using email, members of CoPs share perspectives and expertise and identify practices that promote the participation and success of people with disabilities in education and careers. With a range of CoPs from Disability Services, Universal Design for Higher Ed, Broadening Participation, and Industry and Career Services, there is a forum for nearly every interest.

What Is Public Information? What Is Private?

One very important skill—especially in an era of social media—is learning when and how to share information, and with whom. What you choose to share with your roommate will be different than what you share with your landlord. Students should be taught how to disclose personal information in a way that keeps them safe.

Conferences and Webinars
July 18: 3:00 PM ET
Webinar – “Overview of Labor Laws and Employment Related Issues,” hosted by NTACT. Participants will learn how federal and state laws affect work experiences for transition age youth aged 14-21.

July 22-24
Conference: 2019 OSEP Leadership Conference, IDEAs That Work. Arlington Virginia.

July 22-25
Conference – National Council on Independent Living, Washington, DC.

September 9-27
Online Course – Choose, Get, Keep Integrated Community Housing. Hosted by Independent Living Research Utilization (ILRU).

October 25-28
Conference – Association of Programs for Rural Independent Living Annual Conference (APRIL) Grand Rapids, Michigan.

November 14-16
Conference – Federation of Families for Children’s Mental Health 30th Annual Conference, Phoenix, Arizona.
This month, back by popular demand, read Heather Tomko’s blog post, “Managing Independence,” from March 2019. Heather is a Research Coordinator in the Health Policy and Management department of the University of Pittsburgh’s Graduate School of Public Health, where she is also pursuing a Masters of Public Health.

Affordable Housing for People with Disabilities

The US Department of Housing and Urban Development (HUD) is offering $150 million in grants to provide affordable housing to approximately 18,000 non-elderly persons living with disabilities. HUD anticipates awarding 300 grants ranging from $20,000 up to $3 million to eligible public housing agencies. Applications are due on Thursday, September 5, 2019.

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 (PTAC) and the seven Regional PTACs.