RAISE The Standard, January 2023, v.10 n.2

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Independent Living

The term “transition planning” casts a wide net. It is a lot more than making a resume or completing a college application. Transition IEP teams must consider other areas too, such as independent living and community participation.

When a student graduates from high school with job skills or a college acceptance letter but cannot navigate the adult world well enough to get there – and stay there – it is not a successful transition. In this issue of RAISE The Standard, we explore the often-overlooked aspect of transition planning: independent living.

We love this short video featuring three adults with disabilities sharing their experiences and perspectives about travel. Hear what Haben, Naomi, and Justin learned, not only about the world itself, but about themselves. It changed the way they saw themselves and the ways in which others saw them.

“I found that I could do the things that I wanted to do… and none of what was limiting me would keep me from doing anything that I wanted to do.”

Click here to access Haben's, Naomi's, and Justin's video.

Independent Living Skills

Self-care and independent living skills are vital. Students need to learn interpersonal communication skills, daily living skills, financial management skills, and the self-management of healthcare/wellness needs. What should be part of the IEP in the transition years to support these needs?

1. Instruction based on assessment data, in (1) financial planning, (2) self-help, (3) cooking, (4) housekeeping, (5) home maintenance, (6) using transportation, (7) clothing care, (8) accessing community services, (9) time/ organizational management, (10) self-determination, (11) social roles/ citizenship, (12) community/peer relationships, or (13) critical thinking and problem solving.
2. Instruction on self-care/independent living skills, embedded in academic coursework, to help students connect academic skills to post-school goals.
3. Instruction in self-care/independent living skills in multiple settings including general education, special education, and the wider community.
4. Individual, small group, or whole class instruction in independent living and self-care skills, as appropriate.
5. Multiple opportunities to practice independent living skills throughout the school day in real-life situations, using real-life materials and equipment.
6. Linkages to post-secondary services (e.g., completing housing applications and obtaining Social Security Disability)

This is a favorite here at RAISE The Standard. This tongue in cheek video unpacks some of the challenges and pitfalls of living with a roommate: It covers topics like money, cleaning, food and meals, noise, food sharing and more with a sense of teen-aged humor.

Click here to access the video produced by PACER Center.

Teaching Self-Care Skills

Did you know that good self-care skills correlate with improved education, employment, and independent living outcomes?

According to NTACT, self-care/independent living skills are skills necessary for management of one’s personal self-care and daily independent living, including the personal management skills needed to interact with others, daily living skills, financial management skills, and the self-management of healthcare/wellness needs.

Want to learn more about HOW to teach these vital skills?

Click here to access the Fact Sheet on Self Care and Independence prepared by DCDT in collaboration with the NSTTAC (Nation Secondary Transition Technical Assistance Center)

Talking to Your Health Care Provider

Talking to your doctor about your needs can be hard. Listen in as Theresa talks to her pediatrician AND her mom about what she wants when she leaves for college – from sexual health and friendships to emergency planning.

Click her to access Theresa's video.

And check out Mary Allison’s sage advice on how to talk to your doctor.

Here are some of the top tips for those conversations:

1. Find a doctor who understands you, your disability, and how it affects you.
2. Come prepared to your healthcare transition appointment.
3. Demonstrate that you value shared decision making.
4. Follow up with your healthcare provider about critical next steps to assure accurate transfer of records and information.
5. Tell your doctor about your life, so they can see you as a person – not a disability.
6. Share the name of your disability and any medications you take to treat it.
7. Share some goals with your doctor.
8. Ask about alternatives to medication.
9. Share any uncomfortable issues related to your disability so your doctor can help you. (Tics, ostomy bags, etc.)
10. Present your problem as real problems.

And remember, doctors are human and may not have all the answers.

There are eight (8) Rehabilitation Services Administration (RSA) Parent Centers throughout the United States that provide training and programming to youth and young adults with disabilities, their families, professionals, and other Parent Centers. The focus is on issues surrounding youth transition.

RSA Parent Centers 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.

In this issue, we highlight

REAL Transition Partners (SPAN), a collaboration between all 26 Region A parent centers will provide innovative services that involve diverse youth/young adults with disabilities and their families, highlight the region’s strengths and collaborative spirit, and through a regional Community of Practice, enhance participating parent center capacity around transition and adult service systems. SPAN Parent Advocacy network is the lead partner in Region A-2 for parent centers in Delaware, Maryland, New Jersey, New York, Pennsylvania, Washington DC, Puerto Rico and Virgin Islands.

Learn more here about REAL Transition Partners (SPAN).

They have a rich bank of archived webinars, including this one on Independence. Click here to access the webinar.

Webinar: Tools to Support Meal Planning and Cooking

May 2024: PACER will host a free webinar, “Tools to Support Meal Planning and Cooking,” which will explore assistive technology (AT) to support adults with disabilities to increase independence in the areas of meal planning and cooking. We will demonstrate apps and devices that support healthy eating, meal planning, and following cooking instructions. Join us to learn about AT which can help teens and adults develop the skills needed to manage their own meals and live more independently.

Register for the PACER webinar.

The Center for Transition to Adult Health Care

for Youth with Disabilities

The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care and no gaps in service.

Click here to learn more about the Center.

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.

* For more on SPAN Parent Advocacy Network and all of the complementary programs supported, visit spanadvocacy.org.