Toolkit

Transition to Adulthood Services: Continuing to Foster Self-Determination, Choices and Self-Advocacy

This toolkit describes some common needs and challenges of youth and their caregivers during the transition to adulthood. It is focused on the transition to adult services and how self-determination can be fostered during this time. The hope is that parents and youth or young adults with autism or an intellectual disability will explore this toolkit together. The intended audience are those families whose youth will have some degree of independence and are not solely dependent on others for their care.

Transition to Adulthood Services: Continuing to Foster Self-Determination, Choices and Self-Advocacy

Photo by STIL on Unsplash 

Overview: 

 

This toolkit describes some common needs and challenges of youth and their caregivers during the transition to adulthood. It is focused on the transition to adult services and how self-determination can be fostered during this time. The hope is that parents and youth or young adults with autism or an intellectual disability will explore this toolkit together. The intended audience are those families whose youth will have some degree of independence and are not solely dependent on others for their care. There are reflective activities and practical tools for the youth and caregiver to explore together.

Activity Icon Training · Free image on Pixabay

Activities are intended for the youth or young adult, but are meant to be collaborative in nature with a parent or support worker providing guidance and sharing their input.

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Aims of the Toolkit: 

After exploring the toolkit, parents and youth/young adults will:

 

  • Recognize different transitions youth and young adults experience. We recognize that each person’s transitional journey to adulthood is unique and influenced by a person’s environment, supports and personal experiences. The transitional process is complex, involves trial and error, and extends over a number of years.
  • Understand the importance of transitioning from youth services to adult services. Unlike the young adult’s transition to adulthood which may evolve over time, the transition to adult services is more finite, often occurring when a young adult reaches the age of majority.
  • Gain insights about the importance of self-determination as one ends child/adolescent services and engages with adult services.
  • Gain strategies to support the transition to adult services.  

 

Toolkit Content:

  • Changes on the Horizon:
    1. Changes Brought About When High School Ends
    2. Desire for Independence
    3. Reaching the Age of Majority - Changes in Service Access
  • Parental Supports:
    1. Choice Making
    2. Self-Advocacy
      • All About Me Booklet
      • Now What? Meeting with Service Providers and Agencies

 

A Glimpse into Sal’s Journey

 

Sal is a youth with intellectual disability and autism who is excited about finishing high school and having more time to himself. His mother, Jenny, thinks about the changes on the horizon as Sal finishes school and swiftly approaches adulthood.  Jenny knows that when Sal reaches the age of majority he will shift from youth-based disability services to adult services as he still needs support.  There is a host of paperwork that is required. Jenny has been planning for that, but is concerned about how Sal will respond and wonders if there is anything she can do to support him. 

 

Changes on the Horizon:

Like Jenny, many parents feel concern and uncertainty about how to best support and plan for their youth’s transition to adulthood. During childhood and adolescence, the family likely accessed a variety of services and supports to foster growth and learning. Teachers, support personnel and the pediatrician – all of whom focused on supporting children and youth – may have been central figures in the individual and family’s life.  For the vast majority of young adults, the need for some form of continued services and supports will remain in adulthood, but the service organizations involved will change, as will the focus of those services and supports. In adulthood the focus in on: 

  • Maintaining the young adult’s health and well-being 
  • Exploring and determining post-secondary education and/or employment opportunities 
  • Fostering independence by enhancing life skills
  • Exploring housing options and/or transitioning to living more independently 
  • Being part of one’s community (developing meaningful relationships/friendships).

 

 

 

WHAT WE KNOW: 

The demand for adult services in all of these areas is growing rapidly. In 2011, over 70% of people diagnosed with autism were reportedly under 14 years of age, with a significant wave approaching adulthood1

 

 

As youth transition into adulthood, one may think that this transition is fairly straightforward and seamless. However, in reality, the transition from youth to adulthood can be complex. There are numerous changes happening in a young adult’s life, coupled with the need for a new ‘set’ of services and supports which can make this phase of life stressful for families.2-4 Let’s explore these changes in more detail:

 

  1. Changes Brought About When High School Ends:

 

Finishing high school has a significant impact on the young adult as their daily routine ceases to exist and the relationships that have been formed over the years may end or change. This means:

  1. The young adult needs to find a new role and daily activities (post-secondary education, job skill training or employment) that are meaningful.
  2. Relationships with high school teachers and friends may end. There will be a need to establish safe and meaningful relationships with others in new environments.
  3. The young adult needs to determine how to use free time constructively now that the routine of high school has finished.

 

 

For a young adult, this may bring about a transition to a different educational setting – shifting from high school to post-secondary education. Or finishing high school may trigger employment expectations for the young adult. Perhaps the expectation is to engage in the world of work for the first time or to shift from short-term, seasonal/part-time work to more full-time work or career engagement.

 

For some, they may have very clear ideas of what they want to pursue immediately after high school and this transition may occur quickly. But for the vast majority this is a time of trying to establish an understanding of one’s strengths and interests, and how those strengths and interests align with further education or future work. This transition can be lengthy given a young adult’s development, preferences and motivation. Access to supports/guidance and opportunities also influence this transition.

 

 

WHAT WE KNOW:

Determining this next step is a challenge for most youth. If you are looking for supports to identify strengths and interests for post-secondary or employment direction, here are a few resources that may be helpful: 

Identifying Strengths and Interests

  1. Do2Learn JobTIPS Student (www.do2learn.com/JobTIPS/index.html): This website provides a variety of activities related to exploring job preferences and interests.
  2. Transition Planning Guide: A Career and Education Planning Guide for Students with Disabilities (https://alis.alberta.ca/media/697117/transguidedisabilitystudent.pdf).

 

 

The completion of high school may also result in new transportation challenges. The supported transportation that may have been offered through school ends, and there may be a need to find or manage transportation independently that may include obtaining a driver’s license or navigating the public transit system.

 

 

WHAT WE KNOW:

The transition to post-secondary education, training, and/or employment takes time. On average, the transition from school to one’s “life's work” takes 10 years for young adults without a disability5.

 

 

Campbell, Ungar and Duttonin their book ‘The Decade After High School A Parent’s Guide’ generated this infographic (refer to this website for a free download of the book (https://ceric.ca/resource/the-decade-after-high-school-a-parents-guide/):

 

image

 

 

 

WHAT WE KNOW: 

For young adults with disabilities, greater opportunities to build their skills and career-related experiences are needed,suggesting that the career path will likely have even more ‘twists and turns’ and take more time.

 

 

 

  1. Desire for Independence:

Changing roles and responsibilities emerge for youth and their parents in the home environment when youth transition to adulthood.

  1. For the young adult, they may want their parents to relate to them as an adult and seek increased independence (e.g., decision making, finances) and increased autonomy.
  2. For parents, their adult child’s desire to have more independence, needs to be tempered with the parent’s need to ensure that their adult child is safe.

 

 

This Photo by Unknown Author is licensed under CC BY

  

 

 

 

 

 


 

WHAT WE KNOW:

Nearly 70% of adult children with disabilities continue to live with their family compared to nearly 51% of adult children without disabilities.8

 

 

Finding ways to foster independence at home for the young adult may be helpful. Some suggestions include:

  1. Having the young adult use technology to assist with independence. For example, a tablet or cell phone can be used to record ‘to do’ lists, set timers /alarms, and manage day-to-day appointments. All of us may benefit from using this technology.
  2. Engaging the young adult in household chores independently:
    1. Track accountability with household chores by developing a ‘job-like’ solution to track house duties such as using a time sheet.
    2. Create a specialized cleaning kit for the young adult’s room that is easily accessible to them.
  3. Creating living spaces that afford the young adult privacy:
    1. Designate amenities (e.g., a reserved cabinet in the kitchen or a mini fridge) for the young adult. Or create a ‘dorm’ like space that offers greater autonomy within the home.
    2. Designate an area for relaxation.
  4. Encouraging the young adult to have more interaction with a broader support network. Broader support networks decrease dependency on a single or a few select people and help broaden experiences and perspectives.  Engage family and friends.
  5. Fostering the young adult’s active involvement in making healthy lifestyle choices related to friends, physical activity, food, and alcohol/drug and tobacco use.  

 

  1. Reaching the Age of Majority - Changes in Service Access

 

Reaching the age of majority in healthcare and social services, means a person ages out of childhood/youth services and must access adult services. This often results in service access changes that initiate role changes for both the parent and the young adult.

 

For the young adult engaging with adult services this may mean:

  1.   The young adult is more involved in making decisions about their healthcare and services;
  2.   The young adult independently attends appointments (or may opt to bring a family member or friend for support);
  3.   The care provider focuses on speaking directly to the young adult;
  4.   The parent won’t have access to young adult’s information without their permission.

 

 

Transitioning to adult healthcare and social service systems means more responsibility for the young adult. Having to meet new healthcare and other service providers can be daunting for the individual and their family.

 

 

WHAT WE KNOW: 

Not engaging with the adult healthcare system can result in fewer opportunities for young adults with disabilities to participate in their communities. This in turn can negatively influence their quality of life, health, and well-being.9,10 Being connected with supports and services fosters community inclusion. This assistance also nurtures social interactions and peer relationships that positively influence well-being. 

 

 

Parental Supports:

Numerous changes are happening from adolescence to adulthood. Parents can support youth who are transitioning to adulthood by promoting choice making and self-advocacy skills.

 

  1. Choice Making 

 

Sal’s Decisions 

During high school Jenny and Sal were involved with his teacher in program planning. Sal picked some of the classes he would take and agreed to volunteer at the local Soup Kitchen. But now that high school is finished, Sal just wants to stay home and stop volunteering at the Soup Kitchen because that was something they set up at school and he doesn’t want to do this activity anymore. Jenny feels volunteering at the Soup Kitchen is extremely important for Sal and does not support his decision. 

 

Like Sal, many youth transitioning to adulthood want to make their own decisions about what they want to do. Like Jenny, many parents want to honour their adult child’s desires, but may be tempted to make decisions for their adult child, especially if they believe that the individual is not making a good decision.

 

 

 

WHAT WE KNOW:

“Parents of children with disabilities provide fewer opportunities for their children to make choices and decisions, to engage in trial-and-error activities, and to set and work on personal goals."11

 

 

Engaging young adults in ‘choice making’ is an important way to promote self-determination skills. Choice making involves evaluating options, making a choice, and being responsible for that choice. Sometimes a choice turns out great and that makes us happy. Other times, a choice doesn’t turn out as expected, and can cause disappointment and/or make us feel unhappy. These skills are developed in childhood and adolescence, and will continue to develop and be used in adulthood. 

Activity Icon Training · Free image on Pixabay

Activity 1: Choices: This activity provides both the young adult and parent with an opportunity to reflect on previous choices (This worksheet is available in the Appendix). 

 

Jenny’s and Sal’s Choices:

Choice made:

How did it turn out? (Was it successful or not successful?)

How did the result make you feel?

What did you learn from that experience?

Jenny: Training with a running group to run a 5 km race.

Successful

I was thrilled to reach the finish line. I wasn’t fast, but I did it.

 

I tried something new that I didn’t think I would like. The group I trained with really encouraged me.

Sal: Using my money to purchase a fan.

Successful

I am always hot and the cold air feels great.

 

I spent my money on something that makes me feel better.

 

Perhaps it was easy to generate some examples of successful choices. Here are some more examples from young adults: 

 

  • Talking to someone who is trustworthy and who will not share what you don’t want shared.
  • Getting sound advice from a trusted source about educational/vocational plans.
  • Participating in a photography class.

 

Making a successful choice encourages us to make similar choices in our future. Also, all of us have experiences in which we have made a less successful or an unsuccessful choice

 

Jenny’s and Sal’s Choices:

Choice made:

How did it turn out? (Was it successful or not successful?)

How did the result make you feel?

What did you learn from that experience?

Jenny: I quit a job when I was younger because I didn’t want to work on Saturdays.

Not successful because I found out that the next job still required me to work on Saturdays.

I was disappointed because the first job was a pretty good job. The next job was “just alright”, but I still needed to work on Saturdays.

 

I was impulsive when I quite that job. 

I was fortunate to get another job. 

I learned to tolerate working on Saturdays, and it helped me think about my career. I wanted to find a job where I did not need to work on weekends.

Sal: When high school ended, I stopped being a volunteer at the Soup Kitchen because I didn’t really feel like going out and assumed that I would get a paying job right away.

Not successful because I stopped a vocational opportunity that might help me gain experience for a job. Stopping my volunteer role did not immediately lead to a job, and I didn’t have enough to do all day at home.

I was bored and am sorry I gave up something that was enjoyable.

 

 

I learned that it is good to have some work experience. I’m learning that I want a job, and am now working hard to find work.

 

Perhaps we took a risk or made a mistake, and ultimately were disappointed with the outcome. Here are some examples from young adults:

  • Trusting someone who is not trustworthy
  • Taking a course/program that is not suited to one’s interests or talents. 

 

When a choice doesn’t turn out and thus leads to feelings of disappointment, this can be reframed as a learning opportunity. When expectations are not met, we can try again, modify our choice, and/or make choices that are better suited to our abilities and interests. With thought and changes, we can sometimes turn an unsuccessful choice into important learning and a successful choice. 

 

 

INSPIRATION:

Nelson Mandela said “I never lose. I either win or learn.”

 

 

 

Being self-determined means carefully considering the options, making a choice and then accepting the consequences of that choice. It’s great to have numerous opportunities when making a choice, and this doesn’t need to be done alone. It is often useful to engage other people like parents or others who know us well and who want us to succeed. These people are helpful as they listen and support our decision making.

 

Sal Considering a Choice:

Choice Considering:

Who can I talk to?

Good or positive things if I make this decision:

Not good or negative things if I make this decision:

Choice or Options to Explore:

Sal: Applying to work at the local bakery for 15 hours a week

Jenny

Grandad

  • Earn money
  • Prefer being in warm/hot environments
  • Gain work experience
  • Enjoy making bread in bread maker at home
  • Don’t have as much leisure time
  • Less time to myself
  • Job tasks include washing dishes and sweeping
  • Have to get up early for work shifts

Is there something I would enjoy doing more in the community?

What is a reasonable amount of time to work?

 

  1. Self-Advocacy

 

Engaging with Adult Services

 

Because Sal is over 18 years, he has to switch to an adult doctor. But Sal isn’t keen about having to meet with a new doctor. He really liked his pediatrician, Dr. Morrison, who Sal had seen for the past 16 years. When they would see Dr. Morrison, Sal let his mom do most of the talking. Even though Jenny did most of the talking, Sal was never keen on her being in the room with him and Dr. Morrison. As an adult, Sal may want to see the doctor by himself. If Jenny isn’t there to speak up for Sal, how will the new doctor see Sal’s amazing strengths, understand who he is and what matters to him, and recognize the supports he needs? 

 

Self-advocacy refers to an individual’s ability to promote themself and address their needs. To promote or advocate for oneself, a young adult needs to know who they are, what they need, and how to get what they need.  Developing a booklet that answers these questions is a great way to foster a young adult’s self-knowledge. The booklet can also support the young adult’s independence when they engage with new service providers in the adult sector, and help establish a relationship between the young adult and the new service provider. 

 

 

WHAT WE KNOW:

Young adults with disabilities recommend creating such a document as it can be of assistance when engaging with new service providers (e.g., doctors, psychologists) and agencies (funding agencies, community programs)12

 

 

 

Creating a Personalized Booklet: All About Me

 

To access the All About Me workbookActivity Icon Training · Free image on Pixabay click on this template: https://docs.google.com/forms/d/e/1FAIpQLSddu-XdukRzuyTsEX5arFBv1hi-olO1aW6EM-edmVm0aLA0Dg/viewform?usp=sf_link

It has been created based on the work from the National Institute for Health and Care Excellence12.   The template also includes questions and strategies from the Autism Healthcare Accommodations Tool (www.autismandhealth.org/ahat) that was developed by the Academic-Autism Spectrum Partnership in Research and Education (AASPIRE; www.aaspire.org)13 as part of the AASPIRE Healthcare Toolkit.

 

We encourage the young adult to seek input from their parent(s) or someone else who knows them well as they work through the template in creating their own booklet. The personalized booklet will share the young adult’s story. It will help service providers get to know the young adult, and provide service providers with strategies on how to engage with the young adult.

 

 

The booklet entitled ‘All About Me’ focuses on the young adult including the following information: 

  • The young adult’s skills and character, and what’s important to them
  • Their strengths and achievements 
  • Their hopes for the future
  • Goals the young adult wants to achieve
  • Information about the young adult’s:
    1. Educational history
    2. Employment/volunteer work history
    3. Medical and health situation and/or needs
  • Preferences of the young adult including:
    1. How the young adult would like to have their parent(s) involved when they engage with others (e.g., doctors, service providers)
    2. How the individual wishes to communicate with others 
    3. Strategies that agencies and service providers can use to make meeting and engaging with the young adult better.

 

 

This booklet could contain a great deal of information, but the young adult can decide what to include and how it should be presented. Pairing a resume-type format with visuals makes for an engaging story, and likely supports the young adult’s ability to share their preferences with others.

 

 

Now What? Meeting with Service Providers and Agencies

 

Having created a personalized booklet to help new service providers and agencies get to know the young adult, it is important for the young adult to do a few more things to make the most of their visit with new professionals/service providers. The young adult will need to:

  1. Have a copy of their personalized document (All About Me) that can be given to the service provider or agency.
  2. Prepare a list of questions for the service provider or agency that they will take with them to the appointment.
  3. Ask a family member or friend to accompany them to the appointment if they want this support. A support person can be a great help with remembering details or instructions provided at the appointment. Alternatively, they may want to ask the service provider or agency if they can record the session.

 

During this meeting, here are a few simple ways for young adults to seek to ensure that the meeting is a success.

  1. Use the prepared list of questions to tell the service provider or agency what you want to discuss. Begin with what you most want to learn or are concerned about.
  2. Engage a support person to attend with you, if desired. Discuss how they can be of help to you (for example, a second “set of ears” and/or to take notes).
  3. Ask for information:
    1. What do I need to do?
    2. What can I expect?
    3. What can you do to help me?
    4. Who can I reach out to if I need help?  
      1. Name:
      2. Contact information (e.g., phone number, email)
  4. Ask for explanations. Service providers and agencies may use expressions or words that you are not familiar with or don’t understand. Ask your service provider:
    1. Would you please explain terms or ideas using simpler language?
    2. Can you show me a picture to help me understand?
    3. Can you demonstrate what you mean?
  5. Decide together what ‘next steps’ are needed for you and for the service provider. Write down instructions and information before you leave the appointment.
  6. Repeat instructions and practice what the service provider or agency asked you to do in front of them.
  7. Be clear on follow up instructions with the agency or service provider.
    1. Is follow up required?
    2. Who will follow up?
      1. Will the service provider or agency follow up?
      2. What are they planning to do?
      3. What do you need to do?
    3. When will follow up occur?
    4. What needs to happen before the follow up?

 

 

Sal and Jenny: Moving Forward 

 

As agreed, Sal (with Jenny’s support) found a job that he is pretty interested in applying for. Sal still does not know what his long-term goals are. So for now, he is gaining some work or volunteer experience. Sal and Jenny are also continuing to explore adult services, and Sal is committed to further developing his independence. He has used his personal booklet to meet with his new doctor which helped Sal establish a relationship with the doctor.  Sal and Jenny may not know exactly what the future holds, but they are taking things one step at a time, and are considering each step and what is best for Sal. 

 


 

 

References

 

  1. Gerhardt, P. F., & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy: On the Cutting Edge of Modern Developments in Psychotherapy, 41(1), 37-  45.  https://doi.org/10.1007/s10879-010-9160-2
  2. Neece, C.L., Kraemer B.R. & Blacher J. (2009). Transition satisfaction and family well being among parents of young adults with severe intellectual disability. Intellectual and Developmental Disabilities. 47:31–43. [PubMed: 19170417] 
  3. Thorin E.J. & Irvin L.K. (1992). Family stress associated with transition to adulthood of young people with severe disabilities. Journal of the Association for Persons with Severe Handicaps. 17, 31–39. 
  4. Whitney-Thomas J. & Hanley-Maxwell, C. (1996). Packing the parachute: Parents’ experiences as their children prepare to leave high school. Exceptional Children. 63, 75–87. 
  5. A Career Development Resource for Parents: Helping parents to explore the role of coach and ally.(2006).  https://www.edu.gov.mb.ca/k12/docs/parents/cardev/cardev_resource.pdf
  6. Campbell, Unger & Dutton. (2008). The Decade After High School A Parent’s Guide. The Canadian Education and Research Institute for Counselling
  7. Easter Seals Living with a Disability Retrieved from: https://www.easterseals.com/explore-resources/living-with-disability/disabilities-study.html
  8. National Educational Association of Disabled Students (2019). Accessibility and universal design in career transitions programming and services: Final report.
  9. Steinbeck, K., Brodie, L. & Towns, S. (2008). Transition in chronic illness: Who is going where? Journal of Pediatric Child Health, 44 (9),478-482.
  10. Stevens, E., Steele, C.A., Jutai, J., Kalnins, I.V., Bortolussi, J.A. & Biggar, W.D. (1996). Adolescents with physical disabilities: Some psychosocial aspects of health. Journal of Adolescent Health 19 (2), 157-164. 
  11. Landmark, L. J. & Zhang, D. (2006). Parent practices in facilitating self-determination skills: The influence of culture, socioeconomic status, and children's special education status. TASH Connections, 32(5/6), 4.
  12. Transition from children’s to adults’ services for young people using health or social care service. February 2016. https://www.nice.org.uk/guidance/ng43.  Accessed on March 3, 2020.
  13. Autism Healthcare Accommodations Tool Retrieved from: https://www.autismandhealth.org/?p=ahat&theme=ltlc&size=small. Accessed March 11, 2020.


 

 

Appendix 1:

Activity Icon Training · Free image on Pixabay

 

 

Making Choices

 

 

Parent Choice Examples:

Choice made:

How did it turn out? (Was it successful or not successful?)

How did the result make you feel?

What did you learn from that experience?

 

 

 

 

 

 

 

 

 

 

 

 

 

Young Adult Choice Examples:

Choice made:

How did it turn out? (Was it successful or not successful?)

How did the result make you feel?

What did you learn from that experience?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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