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  • Apr
    1
    2016

    Intellectual and Developmental Disabilities Awareness

    Posted by: Board of Commissioners Office

    ​This article appeared in the April 2016 edition of the Salem Business Journal. 

    By Commissioner Sam Brentano

    My fellow commissioners and I recently proclaimed March as Intellectual and Developmental Disability Awareness Month. While this is an important topic in our community, it is personally significant to me to me and my family. On our monthly television program, Marion County TODAY, I shared the story of my granddaughter Caroline who lives with 5p- (Five P Minus) Syndrome also called Cri du Chat. It means that a portion of her number five chromosome is missing. Caroline is the highlight of my life and I shared her story to raise awareness of available services and challenges faced by people living with disabilities.

    When my granddaughter was first diagnosed, the outlook was not good. We were told that she would likely never experience a full quality of life. Well, the Brentanos are fighters and we learned that with the right interventions and therapy Caroline could thrive. She's experienced many accomplishments, a few setbacks, and through it all is a happy little girl who adds immensely to our family.

    The Marion County Health Department provides a variety of services including case management to children and adults with developmental disabilities and is one component in a wide array of services. Additional service providers include the Oregon Department of Human Services, Northwest Senior and Disability Services, school districts, and various non-profits offering specialized services. Navigating this complex system can be challenging, especially for families of those newly diagnosed.

    Last fall I attended a community discussion by Oregon Developmental Disabilities Services with my daughter Sarah, Caroline's mother. They explained recent changes in the system and some of the challenges families have experienced obtaining services. A common challenge is the lack of case workers to advise families and coordinate care. As more children become eligible for services the corresponding funding has not increased adequately to cover necessary services. At that time, there was no organization to oversee the entire range of services for clients and their families.

    My daughter has been a tireless advocate for Caroline. Through Sarah's persistence, Caroline recently started a new therapy focusing on her mobility. The results have been dramatic. In just a short time Caroline went from having no interest in using her walker to tooling around the house like a race car driver. Through this process we learned there can be many obstacles to obtaining services. We learned that fewer than 4% of eligible clients that have the highest need, like Caroline, are receiving a full complement of services.

    My intention is not to criticize, but instead to make people aware of the need in our community and ensure that people understand the real difference the right services make in the life of someone with a disability. Marion County's Intellectual and Developmental Disability program goal is to coordinate with federal, state and local agencies to put together individualized plans that give children and adults the best chance of success with the resources available. I thank them for their dedicated advocacy of these special community members and look forward to the day when funding isn't an issue.

    If you would like more information about Marion County's Intellectual and Developmental Disability program, visit www.co.marion.or.us or call (503) 588-5288. I encourage you to take the time to learn more about these and other programs in our community. Our television program is available on YouTube at https://youtu.be/KpJ3l9UG7b4

    Intellectual and Developmental Disabilities Awareness
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