[Research Paper] Helping People with Developmental Disabilities Live their Authentic Life
by, Cindy Giacomini
Becky Scott and Navigators way
Helping people with developmental disabilities identify their goals and objectives and develop an action plan and identify supports needed to achieve their goals.
In the 16 years of working with adults with development disabilities I have found it very difficult to help them identify goals that they want for their life along with an action plan and motivation to reach those goals. It always seems that we as a support group fall short in either getting to the meat of what they really want to work on or not setting clear goals with an element of celebration at each step to help them be motivated and encouraged to continue working on the goal. The desired outcome from this project is to identify where my organization is falling short in the goal process (Individual service plan), the supports and resources towards the goals and the celebration towards each step made and the implementation of a coaching model and tools to help fill those gaps.
Statement of the Problem:
Some people with development disabilities have a hard time expressing their hopes, dreams and desires for their lives. They depend on other people to answer for them or to decide what they need to work on. The support staff generally lacks the ability to help the person identify true goals and depends primarily on standard goals. The staff has areas that they need to “fill” so they put “activities” in place and call them goals, such as “work on reading skills”. The goals have no real “end” or completion and therefore no real accomplishment.
Significance of the Problem:
People with disabilities never get to explore their own life and live it according to their desires. They live a life that others tell them they are going to live. They do not have “natural supports” in their lives; they are generally surrounded by paid staff that it is their “job” to support them.
Steps to Solve the Problem:
Below are the steps that I will use to solve the above identified probable are as follows.
1. Develop a communication process with the entire circle of support to discuss what their desires for the person are and educate them on the new process of goal discovery. This will include helping the Circle of Support with their fears and concerns for the person. This will also include teaching the Circle of Support to encourage the person to speak for themselves and not to answer questions for them. There will be a separate program developed for the staff and facilities so that they will be able to deliver this information in a way that will empower everyone, they will know how to ask questions and how to develop a “SMART” goal and an action plan. (Use the tools under M- Magnify)
2. Understand the abilities of the person with disabilities, learning style, level of ability to understand, what limitations their disability may add. This is really important part, in order to be able to present information to the person with disabilities you need to know if there are visual supports needed, if there are translators, alternative modes of communication. (Use tools and supports under Y- Your Strengths)
3. Educating the person with disabilities of what goals are, why they are important; spend some time helping them understand why we want them to come up with goals. Help them understand that this is a fun process and for them to be able to grow and learn in the direction that they want to with support. Help them see how “goals” have helped them in the past and set up small goals that they will for sure succeed at right away so they enjoy the goal process. (Use tools and supports under L- Learn)
4. Present tools that will help the person with disabilities explore ideas and goals and develop the action plan and support for the action plan. This is the exciting part! Help them see who they want to be here they want to be. Ask a lot of questions am do this in a one to one setting so that the person feels they can be open without being ridiculed. Use the mind mapping process with level appropriate supports such as pictures or Icon’s that help them identify what things they may want or are interested in. Use the MY LIFE board game so they can play with their friends and see what they are constantly picking. Use level appropriate cards, help them visualize their dreams. (Use the supports under I-Investigate, it’s important to be creative and use several different methods so that the goals that are being picked is directed by the person)
5. Identify a rewards system along with intermittent times to celebrate accomplishments. It is important that the person understands what they are working for. A lot of us are self-directed and/or self-rewarded by feeling proud or happy with our actions. Some people with disabilities do not have the ability to do that. Put in rewards along the way, make them rather small steps to receive their reward and eventually the steps can be harder and longer apart. In the beginning you want to set it up so that they do not fail. It could even being rewarded for showing interest in a particular goal. This is very important step for the support staff to implement and understand. Yes, it is there goal and yes, they should want to do it, however, we need to make sure they have a reward for doing it. (Use the tools under F-Fun)
6. Evaluate the progress and return to step 4 if goals are no longer of interest to the person with disabilities or they have successful reached the goal. This is a never ending cycle, just because a goal was picked and the process was put together to have support staff to help with the goal, it can become something that they do not want to do anymore. And that is ok. Part of this process is teaching them self-advocacy, teaching them to talk for themselves and identifying what they are interested in doing. The other part of this is teaching the Circle of Support to listen. If the person is telling you that they do not want to do something any longer, we have to respect that. If we do not listen when they are saying no, why would they think we would listen when they are telling us what they want! Never be afraid to go back to step four and look at other goals that they may be more interested in pursuing.
THE MOST IMPORTANT THING IS LISTEN, EVERY BEHAVIOR IS TELLING A NEED; BE FLEXIBLE JUST BECAUSE YOU DO NOT FEEL IT IS THE GOAL YOU WOULD PICK FORM THEM DOES NOT MEAN IT IS NOT A GOAL THEY WOULD NOT PICK FOR THEMSELVES.
With the proper coaching model, tools and time, the Coach would help the person with disabilities first understand what a “goal, objective and action plan” is and why it’s important to identify their true goals and work towards them. Coaching will help set out a simple plan that they can both understand and follow as well as an evaluation process and implementation of a rewards system or celebration for each step they successfully complete. Coaching will help them identify their true and empowered life with the objective outcomes and desires that they want to pursue and meet.
There is an assumption that the people with disabilities will have the desire to work on their goals, they will have a desire to learn and achieve their goals and they will have a support system that understands their goals and is as equally supportive even if the goals are not what the support system wants them to work on.
The person’s disability and their understanding of the process may stand in the way. There is also the lack of support from their Circle of support because of their fears or limitations of their understanding of the abilities and strengths of the person they support.
Summary and Conclusions:
The conclusion is that coaching needs to be modified in a way that is understandable and meets the abilities of the people with disabilities. This may include pictures; icons or audio depending on the person’s disability and learning style. The coaching model and tools will have to be individualized for each person’s ability. The support system for the person will need to be educated and have a buy in so that they are interested in support the goals and the action items towards the goals.
Sources of Data:
Interview with Reaching For Independence, Inc. clients with disabilities;
Recommended Model: Coaching Model for Individuals with Developmental Disabilities
Recommended Tool: Coaching Tool to Help Adults with Developmental Disabilities Live Their Authentic Lives
Master Life Coach for Adults with Disabilities, UCI