Transitioning to independent living during the pandemic

A major concern for many families with students who have had brain surgery for epilepsy is how to prepare for independent living, especially when schools and transition programs are closed (or limited) for in-person instruction due to COVID-19. Here are some  resources to help develop your teen or young adult develop independent living skills during school closures.

There are many activities you can do at home, from researching future life options to practicing these practical skills.

1. Start with a simple assessment you can do online at home, like this Independent Living Postsecondary Goal IEP Form or the Casey Life Skills tool to assess behaviors and competencies youth need to achieve their long-term goals. 
2. Begin to develop Student Portfolios and Notebooks or a Positive Personal Profile (PPP)
3. Think about how your young adult will be successful in accessing agency or community resources and services; cooking and domestic skills; budgeting and financial literacy; community participation; social skills; and also what supports or training they may need.

Skills to work on:

• Develop financial literacy skills such as opening a bank account, learning online banking, making a monthly budget, making change, etc. Budget Your Life, Busy Kid App, Cents and Sensibility, Hands on Banking – Youth, Jump$tart’s Reality Check Interactive Career Tool, Practical Money Skills, and a simple video on a “token economy” are some resources to start with.
• Learn about transition-related health and safety skills that your youth might need, including COVID safety (mask wearing, hand washing, and more) as well as general or specialized health care and health management needs (visit the Child Neurology Foundation’s Transition of Care Program, PACER’s Health & Transition page, or Project 10’s Health Care Transition & Resources pages). To learn about healthy lifestyles, you can get instructional ideas from Oregon Health Sciences University: Summary of Lessons from their Healthy Lifestyles Young Adult Curriculum, or learn to cook with the Accessible Chef which has online free visual recipes and resources to help teach cooking skills to individuals with intellectual and developmental disabilities.
• Housing – Consider whether your child will be able to live independently, where they might live as an adult, and what support they may need:
  • This website from the PACER Center assists families as they begin to think about housing options for their family member with a disability;
  • a useful tool from I’mDetermined.com gives a timeline of skills development and additional resources;
  • this guide from the Easter Seals looks at considerations for accessible housing needs. 
• Leisure & Recreation skills are an essential component of a meaningful adult life. Think about how your young adult will participate in activities that they enjoy, build friendships, enhance their health, express their creativity, develop their self-identity and find purpose in their life. Some virtual options to explore:
  • Best Buddies e-Buddies program;
  • Google Arts and Cultures; 
  • Special Olympics School of Strength; and
  • free online classes from Planet Fitness, YogaWorks, or Downward Dog. 
• Transportation needs are often overlooked, but knowing how your young adult will get to school, work, job training, medical appointments, and social or recreational activities is critical. Independence in travel skills has been linked to positive post-school outcomes. See:
  • The Kennedy Center’s Mobility Services: Publications & Resources;
  • The National Technical Assistance Center on Transition’s Quick Guide: Transportation and Travel Instruction;
  • The National Aging and Disability Transportation Center (NADTC) and
  • Travel Training Resources from The Easter Seals.

Self-Determination

Don’t forget self determination – an essential skill for successful transition into adulthood. Research has consistently shown the correlation between early self determination and improved post-school outcomes. Students who are involved in setting their own goals are more likely to achieve them.

Check out:

• Enhancing Self-Determination for Transition-Age Students At Home (from the resources page of Kansas University’s Center On Developmental Disabilities);
•  I’m Determined;
• the Self-Determination Channel (a YouTube channel by and for people with developmental/intellectual disabilities); and
• the Zarrow Center for Learning Enrichment with resources to build students’ self-awareness, self-advocacy, and self-determination, including Self-Determination “bell ringers” and ME! Lessons for Teaching Self-Awareness and Self-Advocacy.

Independent Living Transitional Programs

There are many out there, these are just a few ideas:

• College Internship Program (CIP) (throughout the U.S.)
• College Living Experience (CLE)(throughout the U.S.) 
• Mansfield Hall (Oregon)
• REACH Program at the College of Charleston (South Carolina)
• P.A.C.E at National Louis University (Illinois)
• Riverview School (Massachusetts) 
• Scenicview Academy-Transitional School Program (Utah)
• Shrub Oak International School (New York)

For students with visual impairments there is a long list of programs for qualifying students located here (such as College Success @ Perkins, a nine-month residential program for blind and visually impaired high school graduates who are college-bound, as well as students who have attended college and are looking to hone their blindness and academic skills to return to college better prepared; and Perkins’ Pre-Employment Program, which helps students with visual impairments acquire job skills specific to their chosen career path).

Did You Know? Homonymous hemianopia qualifies an individual as statutorily or “legally” blind under the Social Security Act. And many states prohibit driving with homonymous hemianopia. Check out your state’s vision driving restrictions here: State Driving Restrictions, Eye Wiki from the American Academy of Opthalmology.

Residential Living Options

Now is a good time to start to research residential living options (there are many out there, these are just a few ideas!):

• 29 Acres (Texas)
• Camphill Village (Pennsylvania) 
• Clearwater Ranch (California)
• First Place (Arizona)
• Stephen’s Place-Independent Living Community (Washington)
• St. Louis Life-Independent Living Community (Missouri)

For additional information on transition to independent living, please view the following resources:

• Educational Transition After Epilepsy Surgery (transition guide from the Brain Recovery Project, December 2020)
• Exceptional Children’s Life Centered Education Transition Curriculum
• Families Together Teaching Transition Skills During COVID-19
• Friendship Circle’s 15 Farm & Ranch Communities For Individuals With Special Needs (blog post)
• Independent Living Resource Utilization (ILRU) Center 
• Project 10 Transition Education Network  
• Providing Transition-Services for Students with Disabilities during the COVID-19 Outbreak  – resources from the U.S. Department of Education and other federal agencies. On this website are two recorded webinars: Transition Activities at Home (video) and this video specifically focused on students with complex support needs.
• Residential and Training Center on Community Living (RTC/CL)
• Youthhood – a website young adults can use to plan for life after high school