Getting prepared for the rest of your life

When individuals with disabilities are young, there is not much effort put into specific planning for life after high school. In school, this planning generally begins in middle or high school when transition planning becomes a required part of the IEP process. But, it is vitally important to begin to instill the foundations of self determination and self advocacy for all individuals with disabilities early on. If we wait for middle or high school to begin teaching these skills, it may be too late.  

Self Determination refers to the “skills, knowledge, and beliefs needed to engage in goal-directed behaviors based on an understanding of one’s strengths, limitations, and self” (Field et al., 1998). By definition, self determination is "free choice of one's own acts or states without external compulsion" (Merriam-Webster).

Self Advocacy, on the other hand, is "the practice of having mentally handicapped people speak for themselves and control their own affairs, rather than having non handicapped people automatically assume responsibility for them" (Dictionary.com)

Often these terms are used interchangeably but as you can see they are not the same. They absolutely interact and intertwine but they are founded on different skills and skill instruction. Self determination is about knowing oneself and having the efficacy to make informed choices for oneself. Self advocacy is about speaking up for oneself and making others aware of one's wants, needs and choices. You need to be self determined to be a good self advocate and good self advocates take the time to become fully self determined. Many folks can do both well on their own, but some folks will need support. All too often individuals with disabilities are not afforded opportunities to become self determined and may not learn the skills needed to self advocate. 

When people who are supporting individuals with disabilities make decisions for them, have lowered expectations for them or speak on behalf of them without their input, the support people are denying them the opportunity to learn and practice self determination and self advocacy. This is generally not done to be hurtful or negative. I have to believe that most support people are not out to do harm.  I believe that they believe they are helping.  They are intervening to be supportive, to aid the individual with a disability to get what they need and want or to gain access to something.  

While this intervening will likely prove to be successful in gaining the want, need or access, it has also, inadvertently denied the individual with a disability the opportunity to be seen as a self determined, self advocating full member of society.  It has denied them the right to speak up for themselves, make decisions for themselves, and to be seen and heard on equal terms as any other member of society.  When support people intervene on behalf of individuals with disabilities, while meaning well, they diminish that person's standing in society. It also violates basic human and civil rights.  According to Cornell Law School, "self-determination is protected in the United Nations Charter and the International Covenant on Civil and Political Rights as a right of 'all peoples'.” Never forget that "we hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness" (Declaration of Independence).

Self Determination 

"Self-determination is a combination of skills, knowledge, and beliefs that

enable a person to engage in goal directed, self-regulated, autonomous behavior.

An understanding of one’s strengths and limitations together with a belief

in oneself as capable and effective are essential to self-determination. When

acting on the basis of these skills and attitudes, individuals have greater ability

to take control of their lives and assume the role of successful adults" (Field, et. al., 1998).

According to the National Technical Assistance Center on Transition (NTACT) self-determination describes individuals who set and enact goals, make choices, solve problems, evaluate options, and accept the consequences of their actions.  It can also include skill like self advocacy, self awareness and self efficacy

Self-determination, in the context of life planning for people with disabilities, refers to the individual's ability and right to make choices and decisions about their own lives, based on their own preferences, interests, needs, goals, and values. It recognizes the inherent dignity and autonomy of individuals with disabilities and emphasizes their capacity to direct their own lives.

For people with disabilities, self-determination involves having control over various aspects of their lives, including their education, employment, relationships, living arrangements, and overall life direction. It is about empowering individuals to actively participate in decision-making processes and to have a voice in matters that affect them.

Self-determination is supported by principles such as person-centered planning, individualized supports, and the provision of necessary resources and information. It encourages the development of skills, such as self-advocacy, problem-solving, and goal-setting, that enable individuals to exercise greater control over their lives.

Promoting self-determination in life planning for people with disabilities involves fostering an environment of respect, inclusion, and equality. It requires recognizing and valuing the unique strengths, preferences, and aspirations of each individual, and providing the necessary supports and accommodations to enable them to achieve their goals and lead fulfilling lives.

Self Advocacy

Self-advocacy, in the context of life planning for people with disabilities, refers to the ability of individuals to effectively express their own needs, desires, rights, and preferences, and to take an active role in decision-making processes that impact their lives. It involves speaking up for oneself, asserting one's rights, and actively participating in the planning and implementation of services and supports.

Self-advocacy is an essential skill for individuals with disabilities as it empowers them to have control over their own lives and to have a voice in matters that affect them. It involves understanding one's own strengths, limitations, and aspirations, and effectively communicating those to others involved in the life planning process.

Self-advocacy encompasses several key aspects, including:

Knowledge and awareness: Individuals need to have an understanding of their rights, available supports and services, and the systems and processes involved in life planning. This knowledge helps them make informed decisions and effectively advocate for themselves.

Communication skills: Effective communication is crucial for self-advocacy. Individuals must be able to express their thoughts, needs, and preferences clearly and assertively, while actively listening to others and engaging in constructive dialogue.

Decision-making: Self-advocacy involves actively participating in the decision-making process, weighing options, considering consequences, and making choices that align with one's goals and values.

Problem-solving: Individuals need to develop problem-solving skills to identify barriers or challenges, explore possible solutions, and advocate for the necessary supports or accommodations to overcome those barriers.

Building a support network: Self-advocacy does not mean advocating alone. It often involves seeking support from trusted allies, such as family members, friends, mentors, or disability support organizations, who can provide guidance, advice, and assistance in navigating systems and overcoming obstacles.

By developing self-advocacy skills, individuals with disabilities can actively shape their own lives, exercise their rights, and contribute to decision-making processes that impact their well-being and quality of life. It is a crucial component of promoting self-determination and ensuring that individuals have meaningful control over their own life planning processes.

The ARC has published a position paper on self advocacy for individuals with intellectual disabilities. The introduction to this paper encapsulates the importance and impact of self advocacy. " People with intellectual and/or developmental disabilities (IDD) have the right to advocate and/or be supported [supported decision making] to act as self-advocates. Self-advocates exercise their rights as citizens by communicating for and representing themselves and others, with whatever supports they need. Self-advocates must have a meaningful role in decision-making in all areas of their daily lives and in public policy decisions that affect people with IDD." Individuals with disabilities have the right to have control over all decisions made regarding their lives--Don't make decisions about me without me

Supported Decision Making

Supported Decision Making (SDM) in when a person seeks out assistance from, "one or more trusted friends, family members, professionals, or advocates to help them understand the situations and choices they face so they may make their own informed decisions" (Martinis, 2020). This sounds no different from what we all do all the time every time we make an important decision. We seek out advice, reinforcement, clarity from people in our circles that we believe will help us to make good informed choices.  So why is this so different for people with disabilities? Why do we less frequently explicitly instruct them in the skills they will need to make good choices about who to ask for this support in making decisions for themselves?

How SDM is used is unique for each person using it. Some people need or want more support while others need or want less. And it can vary depending on the situation. This holds true for individuals with disabilities as well. "We all seek and receive the supports we need and want, in the way we need and want, to make the decisions we have to make" (Martinis, 2020). There is no one right way to engage with SDM and it should be thought about more as a framework or vehicle through which informed decisions are made.  Individuals need to self determined in order to make informed decisions and they need to know who to turn to in which situations as decision making partners. 

Supported decision making is generally thought of as an alternative approach to traditional guardianship, which recognizes the right of individuals with disabilities to make their own decisions. It involves providing support and assistance to individuals in understanding information, weighing options, and making choices, while respecting their autonomy and preferences. While SDM is often discussed regarding guardianship, it should be considered for all individuals with disabilities.  SDM is a method to support self determination and self advocacy. 

In supported decision making, the focus is on empowering individuals to exercise their legal capacity and make decisions that affect their lives, rather than having decisions made on their behalf by others. The process involves identifying areas where individuals require support, determining the types and levels of support needed, and facilitating the decision-making process through collaboration and communication.

Key elements of supported decision making include:

• Support network: The individual is encouraged to build a support network of trusted individuals who can assist them in understanding information, exploring options, and making decisions. This network may include family members, friends, advocates, professionals, or other trusted individuals.
• Communication and information: The individual is provided with accessible information and resources relevant to the decision at hand. The support network assists in explaining complex information, clarifying options, and facilitating communication between the individual and others involved in the decision-making process.
• Understanding preferences and values: The focus is on understanding the individual's preferences, values, and goals to ensure that decisions align with their wishes. The support network helps in eliciting and respecting the individual's choices and desires.
• Capacity building: The aim is to enhance the individual's decision-making skills and abilities over time. Support is provided to develop skills such as critical thinking, problem-solving, weighing pros and cons, and considering consequences.
• Ongoing involvement: Supported decision-making is not a one-time event but an ongoing process. The support network remains engaged with the individual, providing assistance as needed, and reevaluating support levels based on changing circumstances or decision complexities.

Supported decision-making is often considered a more inclusive and person-centered approach that respects the rights, autonomy, and dignity of individuals with disabilities. It promotes self-determination, self advocacy, independence, and the right to make choices, while ensuring that individuals receive the necessary support to exercise their decision making abilities.

Person Centered Planning

Person-centered planning is an approach to planning and decision-making that places the individual at the forefront, recognizing their unique strengths, preferences, needs, goals and aspirations. It recognizes their right to self-determination, autonomy, and inclusion in decision-making processes related to their lives. In person-centered planning, the individual is considered the expert on their own life, and their voice is prioritized throughout the planning process. It is a collaborative and inclusive process that involves the active participation of the individual, their support network, and relevant professionals in creating a plan that reflects their goals, desires, and needs.

In person centered planning the individual is treated with respect, recognizing their inherent worth and dignity. It recognizes that people with disabilities have unique talents and capabilities that can be harnessed and built upon. The planning process focuses on the whole person, considering their strengths, abilities, preferences, and goals in various areas of life, including education, employment, relationships, housing, and community involvement.

The individual is encouraged to actively participate in decision-making with the support of the individual's support network, including family members, friends, advocates, and professionals who work together to develop a plan that best meets the individual's needs. The support network provides valuable insights, perspectives, and assistance throughout the planning process. 

Person centered planning takes a holistic and long-term view of the individual's life and recognizes that goals and circumstances can change over time. The plan is flexible and allows for adjustments and revisions as the individual's needs, strengths, interests, preferences, goals or aspirations evolve. The process aims to empower the individual by fostering their self determination and autonomy. They are supported in making informed decisions, setting goals, and directing their own life path.

Person-centered planning focuses on identifying and building upon the individual's strengths, skills, and interests. It recognizes their potential for growth, development, and contribution to their community. It ensures that supports and services are customized and tailored to the unique requirements of the individual. It recognizes that each person's disability experience is different, and therefore, the supports and services provided should be flexible and individualized.

Person-centered planning methods can vary, but they often involve facilitated meetings or discussions where the individual, their support network, and professionals collaborate to develop a plan. Tools such as one-page profiles, personal futures planning, or individualized support plans may be used to document the individual's goals, preferences, and strategies for achieving them.

The ultimate goal of person-centered planning is to ensure that services, supports, and interventions are tailored to the individual's unique needs and aspirations. It seeks to promote their well-being, independence, and quality of life by enabling them to actively shape their own plans and make choices that align with their values and goals. By adopting a person-centered approach, people with disabilities are empowered to take an active role in shaping their own lives.