Making Choices is Hard!

Action Plans > Making Choices is Hard!

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1Self Determination / Self-Advocacy

2Supported Decision Making

3Additional Items

Self Determination and Self Advocacy

Self-determination is the ability to make decisions about one’s quality of life without undue interference or influence from others. Self advocacy is the ability to communicate one’s needs and preferences.

Acronym Key: IEP = Individualized Transition Program

Growing as a self-advocate

Practice communication of one’s interests, preferences, and needs.

Approximate Age: As early as possible & ongoing | Who can help: Family, School/IEP Team, Adult Service Providers

Resources: Student dream sheet Self awareness for self advocacy

Practice decision making skills. Choices should be offered & supported as often as possible– start with small choices matter like what one wears, eats, does for fun, who one hangs out with.

Approximate Age: As early as possible & ongoing | Who can help: Individual, family, school/IEP Team, adult service providers

Resources: Supported decision making

Identify needed adult services, and if appropriate, the individual can start learning how to direct and manage these services.

Approximate Age: As early as possible & ongoing | Who can help: Individual, Family, School/IEP Team, Adult Service Providers

Resources: Self directed service options Self directed services

Support the student to participate in their own IEP Meetings. Prepare the individual with what to expect, seek their input on goals, and come up with ideas to contribute in advance of the meeting.

Approximate Age: As early as possible & ongoing | Who can help: Individual, Family, School/IEP Team

Resources: 10 ways to involve your young adult in their IEP meetings

Developing decision making skills

Explore Work Together NC’s leadership & advocacy program library.

Approximate Age: As early as possible & ongoing | Who can help: Individual, Family, School/IEP Team

Resources: WTNC advocacy resources

Learn about the disability rights movement and key figures.

Approximate Age: As early as possible & ongoing | Who can help: Individual,School/IEP Team

Resources: Crip Camp documentary

Learn about supported decision-making and alternatives to guardianship.

Approximate Age: As early as possible & ongoing | Who can help: Individual, Family, School/IEP Team, Adult Service Providers

Resources: Rethinking guardianship Supported decision making action plan

Learn about the differences in the laws regarding disability rights for young people with disabilities from high school to adulthood.

Approximate Age: As early as possible & ongoing | Who can help: Individual, School/IEP Team

Resources: Making the transition for HS to college

Learn and practice how to explain one’s disability and/or the accommodations or supports they need in work, postsecondary education, and community settings.

Approximate Age: As early as possible & ongoing | Who can help: Individual, School/IEP Team, Adult Service Providers

Resources: Effective accommodation practices

Develop a person centered plan, including the individual’s vision and goals for adulthood.

Approximate Age: Upon exiting high school and ongoing updates | Who can help: Individual, Inclusive Postsecondary Education Program (if applicable), Adult Service Providers

Resources: Person centered planning

Supported Decision-Making and Alternatives to Guardianship

An individual is legally considered an adult at the age of 18. This is called age of majority. Before this happens, an individual and their family/care partner will need to decide on how to support the young adult’s self-determination. Supported decision-making refers to the many ways we all get assistance making decisions that affect our lives. Full or limited guardianship is appropriate when the young adult is unable to understand or make their own decision.

Acronym Key: SDM = Supported Decision Making | IEP = Individualized Education Program

Supported Decision Making

Develop a person centered plan, including the individual’s vision and goals for adulthood.

Approximate Age: Upon exiting high school and ongoing updates | Who can help: Individual, Inclusive Postsecondary Education Program (if applicable), Adult Service Providers

Resources: Person centered planning

Develop and practice decision-making skills.

Approximate Age: 12 | Who can help: Individual and Family

Resources: Supporting choice and self determination videos

Continually evaluate decision-making skills and capacity.

Approximate Age: 12 | Who can help: Individual and Family

Resources: Guardianship handouts

Set developmentally-appropriate goals to develop decision-making skills through SDM.

Approximate Age: 12 | Who can help: Individual and Family

Resources: Supported decision making handouts

Contact Disability Rights NC if interested if advocacy assistance is needed related to guardianship or restoration of a person’s guardianship.

Approximate Age: Circumstantial | Who can help: Disability Rights NC

Resources: Restoration to competency Disability Rights contact form

IEP Process

Support the student to have input on their IEP goals through practice expressing one’s needs, preferences, and interests.

Approximate Age: As early as possible and ongoing | Who can help: Individual, School/IEP Team, and Family

Resources: Self advocacy IEP goal ideas

If a student is not participating already, they should begin to participate in the IEP meeting. This is an important opportunity for the student to practice self-determination and learn how to advocate for their own future.

Approximate Age: 14 | Who can help: Individual, School/IEP Team, and Family

Resources: 4 ways students can take an active role in their IEP meetings Student involvement in the IEP manual

The IEP Team will discuss the transfer of rights at least one year prior to the student reaching age 18, age of majority. This is to make sure the student and parents understand that the student’s right to make educational decisions for the IEP will transfer to the student when he or she turns 18. * In most cases, the transfer of rights at age 18 is an appropriate action. In some cases, if the student is unable to understand or make their own decisions, parents may wish to consider full or limited guardianship. Keep in mind there are many alternatives to guardianship. Supported decision-making offers a range of options that give parents an opportunity for continued input into the student’s educational path.

Approximate Age: 17 | Who can help: Individual, School/IEP Team, and Family

Resources: Rethinking Guardianship NC

Preparing to turn 18

Understand what legal status and age of majority mean. It is important that all are aware of the legal changes that happen when a person turns 18 and what it means for the individual and the family/care partner regarding decision making.

Approximate Age: 12 | Who can help: Individual and Family, Special Needs Attorney

Resources: Getting ready for the age of majority

Support the individual’s development of communication skills for sharing personal information such as mailing address, date of birth, phone number. Address safety precautions regarding protecting this information.

Approximate Age: 12 and ongoing | Who can help: Individual and Family

Resources: Learning how to provide personal info Be internet awesome

Set up power of attorney and healthcare power of attorney to take effect when the individual turns 18.

Approximate Age: 17 | Who can help: Individual and Family, Special Needs Attorney

Resources: Rethinking Guardianship PDFs Free power of attorney form

Consider whether a limited guardianship, guardianship of the person and/or guardianship of the estate may be appropriate.*With any of these options, supported-decision making is still an important tool for centering the individual in decisions that pertain to them.

Approximate Age: 17 | Who can help: Individual and Family, Special Needs Attorney

Resources: Healthcare power of attorney info Power of attorney info

If the individual is not their own guardian, ensure that designated guardianship wishes are relayed in the parents’ will and letter of intent. (add period)

Approximate Age: 18 | Who can help: Individual and Family, Special Needs Attorney

Resources: Succession planning for guardians

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Disclaimer: These action plans are for informational purposes only. It is not intended to be comprehensive, and should not be taken as legal advice. Services and programs mentioned may vary by county. Please consult with professionals with expertise in this topic area for guidance specific to you, your family or student/client’s situation. The “approximate age” listed with each item is a general recommendation for when to get started on an action item; however, everyone has a different timeline and for many of the items, it’s never too late to take action! Have a suggested correction or addition to this checklist? Email worktogethernc@med.unc.edu.