A Family's Testimonial
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The Center for START Services
Iowa START: A Family's Testimonial
An Introduction by Dave O'Neal, Iowa START Project Manager:
A family in Iowa reminds us this week of START's mission and why we do what we do. Thanks to the I-START team and to each of you doing this wonderful work.
"Thanks again for advocating on behalf of Mary. It is difficult for us to convey how deeply humbled and grateful we are by your advocacy and action on behalf of Mary and others who have no voice in our society.  The willingness to allocate significant and scarce resources is appreciated by this family on behalf of our daughter whose diagnosis creates so many difficulties in her life.
The amount of research, reaching out, and connecting very disparate parts of Mary’s story into one document is mind-numbing and Felicia has done a remarkable job.  The Comprehensive Service Plan will do what I always knew we needed, it provides the big picture.  This big picture will become more and more valuable as more new people enter into Mary's care.  No one person will be able to hold this big picture in their mind but this document will help teams and individual caregivers see the whole and how it relates to their specific part of working with Mary.

Things we appreciate from the I-START process:
1) The training provided, including:
  • Taking the time to understand the current realities (what is working and what needs tweaking),
  • Researching Prader-Willi syndrome (PWS) to learn what are common issues for people who are living with the syndrome. i.e. Processing deficits, anxiety, OCD, food security etc. How these issues have been successfully addressed with other individuals with PWS.
  • Taking the time to meet with Mary, talk with caregivers and parents to learn how Mary is a unique individual and how her personality and her unique motivations impact the best approach to her support.
  • Felicia balanced the need for the staff to be heard, understood and supported, the necessity of bringing about change in the way things are currently being done, (which is always difficult), and a clear explanation of the why and how we do the things we do with Mary.
  • Felicia's experience as a direct care staff gave her valuable perspective and credibility regarding the things she was asking the staff to do.
  • Felicia also understands there will always be tensions to manage, there is the ideal and there is reality based upon so many competing factors in real life situations. She was able to discern [between] the immovable stakes in the ground that are necessary for Mary and staff to be successful and what things are non-essential.
2) The access to expertise, resources, and vision that the I-START program brings to the table.
3) The Cross-Systems Crisis Prevention & Intervention Plan.  If staff are trained and made aware of this document, we will be able to head off escalation and aggression keeping both Mary and staff safe. This plan gives staff lots of options as they see red flags develop. Staff now have steps to take before the situation escalates to the place where law enforcement is needed to intervene in case of aggression.
We would be honored to share how I-START has positively impacted Mary both in the present and in the years to come." 
- A family in Iowa
A special and timely congratulations to Felicia for becoming a Certified START Coordinator today!

Thanks for reading and happy Friday,

The Center for START Services

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Institute on Disability at the University of New Hampshire