SelfDetermination and Young Adults

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Self-Determinationand Young Adults

• Parents Helping Their Adult Children to Make
  Choices, Gain Control, and Take Responsibility

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Given the right supports, every person should be
able to make choices, informed decisions, and
plan their life.
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What is Self Determination?

• Freedom
• Authority
• Support
• Responsibility
• Confirmation

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Freedom

• to plan their own lives and to live a
  meaningful life in the community.
• The ability for individuals, with freely chosen
  family and/or friends, to plan a life with
  necessary support rather than just be fit into
  existing programs.

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Authority

• over financial resources.
• Control of the resources allocated to them to
  acquire needed services and supports.

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Support

• to organize resources in ways that are
  life-enhancing and meaningful to the individual.
• Opportunity to choose their own supports.
• The arranging of resources and staff that will
  help an individual to live a life rich in
  community connections and involvement.

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Responsibility

• for their choices and the consequences of those
  choices.
• for the wise use of public dollars for supports
  and services.

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Confirmation

• Recognition of the contribution that
  individuals with disabilities can make to their
  communities.

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Guardianship

• is a court-ordered relationship between a
  competent adult and an adult with a disability.
• A guardian is a substitute decision maker for the
  person with a disability.

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Transfer of Rights

• The court gives the guardian the authority to
  exercise specific rights on behalf of the person
  with the disability and at the same time takes
  those rights away from the person with the
  disability.

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• The person with a disability no longer has the
  legal right to decide many things for themselves
• where to live
• where to work
• how they will be cared for and by whom
• what medical care/treatment will be given
• how their money will be spent
• How does this square with self-determination?

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Oil and Water

• Self-Determination
• Individual has
• Freedom to plan their own life
• Control over resources
• Supports they choose
• Responsibility for their choices and decisions
• ?

• Guardianship
• Guardian makes basic life planning decisions
• Guardian/payee controls how resources are spent
• Guardian chooses supports/care
• Guardian has responsibility for decisions

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• We have to reject the very idea of
  incompetence. We need to replace it with the
  idea of assisted competence. This will include
  a range of supports that will enable individuals
  with cognitive disabilities to receive assistance
  in decision-making that will preserve their
  rights.
• Tom Nerney, Executive Director of the Center for
  Self-Determination

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Presume competence.

• See the your child as a person who has the
  potential to take control of their own life
• Because
• Anyone can live a self-determined life with the
  right supports
• Kathie Snow, Disability is Natural,
  www.disabilityisnatural.com

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Alternatives to Guardianship that Support
Self-Determination

• Circles of Support
• Person-Centered Planning
• Risk and Planning

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Circle of Support

• A Circle of Support is like a team.
• Your child should help decide who will be in
  their Circle.
• The Circle should be people that listen to what
  your child wants for their life and respects
  their ideas, dreams and choices.
• The Circle can help your child to find the
  support they need to do the things they want to
  do.

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More Than You

• A Circle of Support can be there for your adult
  child when you cant be.
• A Circle can help your child be more connected to
  their community.
• The more people who know, understand and respect
  your child, the more security they will have in
  their life.

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Person-Centered Planning

• True person-centered planning is done with the
  person, not just about the person or for the
  person.
• Your adult childs preferences and dreams must
  drive the plan.
• PCP is most effective done with a Circle of
  Support that will help make sure the plan is
  implemented.

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Risk Assessment and Planning

• Risk assessment is a valuable tool to address
  specific concerns about a persons support needs
  related to health, behavior, and safety.
• Risk planning identifies structures and supports
  that help reduce risk.
• Why plan for risks? Because it can help reduce
  your concerns about your adult childs
  independence.

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Examples

• I dont always eat the right things and my
  diabetes gets out of control.
• I forget to pay my rent and utilities and spend
  all my money on eating out.
• I get busy and forget to take my medicine when I
  am at work.
• I like to walk out of the store without paying
  for things I put in my shopping cart or my
  pocket.
• If I eat anything with wheat in it I have an
  allergic reaction.

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Start Risk Planning Now

• Include a discussion of risk during
  person-centered planning
• Talk about risks with a Circle of Support
• Make a plan to address each risk
• Include who will provide the help and what they
  will do

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Hopes and Fears

• Hopes for your childs future.
• Fears about what might happen if my child has
  control over their own life.

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How do you see your child?

• How we see our child effects every interaction we
  have with them and our expectations for their
  potential.
• How we see our child effects how they think
  about themselves and their capabilities.
• How we see our child effects how others see them.

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Knowledge is Power

• What will it take for my child to be able to
  make choices, decisions, and take
  responsibility?
• How will they get the knowledge and skills they
  need?

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Supporting Self-Determination

• Create opportunities for your child to make
  decisions and be responsible on a daily basis
• Help them get the information they need to make
  informed decisions
• Help them learn self-advocacy skills as early as
  possible

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Supporting Self-Determination in Planning

• Encourage your child to take responsibility for
  their goals and life planning
• Help your child prepare to participate in
  planning and to take the lead
• Ensure that your childs input is heard and
  honored

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Full Potential

• If we do not help our children to learn
  self-advocacy skills and include them in real
  person-centered planning, we limit their
  ability to reach their full potential.

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Important Decisions

• Guardianship is a very restrictive procedure and
  should only be used when necessary.
• There are many types of legal alternatives that
  can be used to achieve the protections parents
  are seeking for their adult son or daughter.
• Families need good information to make informed
  decisions about guardianship or alternatives.

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Parent Involvement

• Even if rights have transferred to an adult
  student, the parent can continue to be involved
  in the IEP process by invitation of the adult
  student or the district as a person who has
  knowledge or special expertise regarding the
  student.
• This is supported by federal law (IDEA) and
  Idaho statute. Guidelines are included in the
  Idaho Special Education Manual 2007.

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• What self-advocates and parents say

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Resources

• Alternatives to guardianship
• Other legal protections to consider
• Self-determination
• National movement, research, articles
• My Voice My Choice Medicaid option
• Teaching self-advocacy skills
• Curriculums
• Idaho Self Advocate Leadership Network
• Leadership
• Youth Development Projects
• Youth Leadership Forum
• Partners in Policymaking, next class 2009

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• Tracy Warren
• Program Specialist
• Idaho Council on Developmental Disabilities
• [phone]
• 1-800-544-2433
• Email twarren_at_icdd.idaho.gov
• Website www.icdd.idaho.gov