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Self-Advocacy and Risk

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Introduction

The March 2009 feature article titled Risk – Finding the Right Balance was about:

  • Choices that can be good and safe and choices that can be bad or unsafe
  • How risk is an important way to learn about making good choices
  • Different ways to look at risk (called risk assessment) in everyday life
  • Ways to lower the chance of making bad choices (called risk management)

This article is about how:

  • Self-advocacy can support individuals with developmental disabilities in staying healthy and safe
  • Individuals sometimes choose to make unhealthy and risky decisions
  • Direct Support Professionals (DSPs) can meet the challenge of decision-making in a positive way

What is Self-Advocacy?

Self-advocacy is when people with developmental disabilities:

  • Know their rights and responsibilities as citizens
  • Make their own choices and decisions
  • Speak up for themselves

Self-Advocacy and Risk

People develop self-advocacy when they have daily practice in making choices and decisions.

The more opportunities people have to make choices and decisions, the better they get at making them.

As people get better at making choices and decisions, they also get better at speaking up for themselves and doing things on their own.

This can also help individuals get better at problem solving and can make it easier for them to:

  1. Figure out risky situations, where the chances of something unsafe, unhealthy, or bad happening are high; and
  2. Come up with safe and healthy ways to lower their risks in those situations.

There has been research showing that self-advocacy is very positive. For example, in a study of individuals with developmental disabilities who belonged to self-advocacy groups, researchers found that:

  1. Individuals who belonged to self-advocacy groups made more choices on their own than those who were not members.
  2. Self-advocacy groups helped individuals gain more independence by making choices and decisions.

How to Find Out About Self-Advocacy Groups in Your Area

In many areas, there are groups of individuals with developmental disabilities who get together to talk about rights, responsibilities, and speaking up for themselves.

Most regional centers have a Consumer Advisory Committee (CAC). Check with yours to see if there are meetings and if training in rights and responsibilities is available. Your local Area Board is also a source of information about training and information.

For information regarding local chapters, workshops, and conferences on self-advocacy, contact:

People First of California
1225 8th Street, Suite 210
Sacramento, CA 95814
(916) 552-6625 - (916) 387-2379 fax
http://www.peoplefirstca.org/

The motto of People First of California is “We Are People First, Our Disability is Second.”

Supporting Self-Advocacy through Daily Activities

DSPs can encourage people with developmental disabilities to advocate for themselves through daily lifestyle activities. Training and experience in making choices and decision-making can be supported in many ways, depending on the needs and skills of individuals. The desired outcome of all of these activities is to honor individual lifestyle preferences and to support greater independence. Here are some examples:

Activity Self-Advocacy through Choices and Decisions
Timing of events Choosing when to get up or when to go to bed at night or when to get a haircut or when to eat dinner.
Personal choices What clothes to wear, what shampoo to buy, which cereal to eat.
Services and supports Choosing between services and supports, when they will happen and who will provide them.
Staff evaluation Through interviews with individuals who are supported by staff or through observations of staff relationships with individuals.
Hiring of staff Asking individuals to serve on hiring committees or through observations during trial work periods.
Agency board of directors Supporting an individual to serve on the board of an agency that provides services or advocacy to people with developmental disabilities.
Self advocacy training Joining a local People First chapter.
Annual planning meetings Making sure that individuals are present and allowing for time and support to make sure that people understand what is happening and can participate.

Excerpt from It’s My Choice by William T. Allen, Ph.D. Published by Minnesota Governor’s Council on Developmental Disabilities (2006).

When Choice and Risk Are In Conflict

Even with lots of practice in making safe choices, individuals (with or without developmental disabilities) sometimes choose to make risky ones. These are difficult times for DSPs and others who know and care about someone. Individuals have a right to make choices and DSPs and family members (and others who know and care about the person) have a responsibility to help keep the people they support healthy and safe. In these situations, choice and risk are in conflict.

When this happens, it helps if everyone (the individual, family members, service coordinator, and DSPs) works together to figure out their responsibilities. One way to do this is to use something called the responsibility sort. This team process has been adapted by The Learning Community on Person Centered Practices (see Resources at the end of this article) for these kinds of challenges. It helps the DSP and others figure out: (1) core responsibilities; (2) what takes judgment and creativity; and (3) what is not the responsibility of the DSP.

Type of Responsibility What it Means
Core Responsibilities These are things that are expected of the DSP at all times.  If these responsibilities are not met, then something unsafe or unhealthy could happen to the individual.  It would also mean that the DSP is not meeting his or her job duties.
Judgment and Creativity These are the areas where you expect a DSP to use his or her own judgment and creativity when making decisions both about whether to do something and about how to do it.  When they “get it right”, the learning from that experience should be passed along to others. If they “get it wrong,” there is a chance to talk about what can be learned from the experience. 
Not our “Paid” Responsibility These are areas where the DSP has no paid responsibility for what happens.  

Consider the example of Bob, who takes medication and likes to drink beer. He either buys a beer near the bus stop on his way home from work or he goes to the park and buys one from a friend who hangs out there. He doesn’t drink a lot, but he should not be drinking at all because of the medicine he takes. Bob’s planning team worked on this together with him. They started out by talking with Bob about:

  • The risky choice that he was making,
  • What’s important to him about his choice, and
  • What others (like his family, DSPs, and service coordinator) think is important for Bob.

Next, they worked on a plan that balances what is important to Bob with what is important for Bob.

Core Responsibilities of DSPs DSPs Use Judgment and Creativity  Not the Paid Responsibility of DSPs
Risky Choice: Drinking beer and taking medicine.
What’s Important to Bob About this Choice:  He likes beer; he likes to hang out with his friends; and he wants to be like everyone else.
What’s Important for Bob:  To keep taking his medicine; and not to drink while he is taking it.
  • Give Bob the information he needs to make a healthy choice.
  • Remind Bob of the risks of the current choice (for example, he can get very sick and have to go to the hospital).
  • Make sure that all staff that work with Bob know the risks.
  • Let Bob’s primary care physician know about Bob’s drinking.
  • Help Bob make an appointment with the doctor to talk about it.
  • Remind Bob about other ways to be like everyone else (for example, drink non-alcoholic beer).
  • Help Bob get medical attention if he gets sick after drinking.
  • How to remind Bob about the risks and other, safer choices without nagging.
  • Work with Bob to figure out other ways he can be like everyone else
  • If Bob’s primary care physician is not supportive, help Bob find another.
  • Whether or not Bob chooses to continue drinking beer.

 

Everyone on the team agreed to this plan. Bob’s family and regional center service coordinator will help remind him. They will also help think of other ways that he can hang out with friends without drinking. Bob’s support staff feel much more comfortable in dealing with this situation where choice and risk are in conflict.

Resources

  • There are lots of ways to teach about rights and responsibilities, and self-advocacy. One way is to look for information in easy-to-understand language. For example, the Department of Developmental Services (DDS) has published (in English and Spanish), the Consumer’s Guide to the Lanterman Act
  • The work of The Learning Community focuses on planning with individuals, training in how to write plans and in the skills needed to implement plans, and support for organizations that want to consistently use person centered practices and approaches.
  • Direct Service Professional (DSP) Curriculum (California Department of Developmental Services)
  • Fostering Self-Determination (1996, Alaska Center for Human Development, 2330 Nichols Street, Anchorage, Alaska 88508). This book is designed to provide insight to individuals, DSPs, and all people regarding how to build their own self-determination skills, or foster the self-determination skills of other peoples.
  • Self-Advocates Becoming Empowered (SABE)
Last updated on Fri, 04/02/2010 - 12:55