Introduction to Perspectives in Policy

Issue 1, 1/24/2013

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Introduction to Perspectives in Policy

Welcome to the first edition of Perspectives in Policy, a new publication launched by Iowans with Disabilities in Action (ID Action) in partnership with the Iowa Developmental Disabilities Council (DD Council). This publication is intended to provide readers with an opportunity to look at issues related to disability policy from a variety of perspectives. Our goal is that you will gain a multifaceted understanding of disability-related issues, allowing you to develop an informed opinion and take action. In this edition, we will look at how perspectives are shaped and formed based on life experiences, employment, current policies and involvement within the system. Understanding the perspectives of others—and why they have those viewpoints—will provide the insight you need to more effectively discuss issues and advocate for change.

Throughout 2012, Perspectives in Policy will take a closer look at issues of significance to Iowans with disabilities and their families. Those may include topics such as education, employment and mental health redesign from a variety of perspectives, including persons with disabilities, parents/caregivers, elected officials, government staff and service providers.

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Becky Harker's Perspective - Iowa Developmental Disabilities Council

Like all people, my perspectives on policy are influenced greatly by my life experiences. I have a history of being what my parents called a “funny looking kid.” I have a tremor that was first evident at age three, and was never diagnosed despite evaluation visits every six months. Finally, at age 11, I jumped for joy when my parents said, “It is what it is, it’s not progressing, and we’ll live with it.”

I have memories of educators, family members, and friends who didn’t share our perspective and wanted to cure me with vitamins or protect me because I was different. My parents persevered to raise me with the same expectations they had for my two brothers. I grew to learn I was fortunate my parents had those perspectives and expectations. Otherwise, my life may have taken a different turn.

Working with children, youth and adults with disabilities for 20 years taught me that people with disabilities are people first. They all are more concerned about living their lives normally than they are worried about having a disability. Kids wrestle with one another, make forts out of blankets, and fight over toys. Teens want to date, drive, and get away from their parents, and dream of jobs, a loving relationship and kids of their own. My perspective has grown to be that a disability is not the biggest barrier people face. The true barriers are those created by environments and social values that don’t honor differences.

All of my experiences led me to the Iowa Developmental Disabilities Council (DD Council) where my perspective is consistent with the findings of the federal legislation that created state developmental disabilities councils: Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.

My experience and this statement provide the lens through which the DD Council evaluates public policy for Iowans with developmental disabilities.

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Sen. Jack Hatch (D) - Des Moines

Senator Hatch has a long history of working with and advocating for Iowans with disabilities and disability-related issues. Over the years he has had many experiences that have shaped his perspective regarding disability policy. His earliest recollection is very personal: His best friend passed away from an epileptic seizure at an early age. From that point, and especially when he became a member of the Iowa Legislature in 2000, he began to notice that there were many disconnects in the system, and he wanted to take action to bring the pieces together.

As a legislative member of the mental health redesign interim committee, Hatch has the important role of understanding and incorporating the opinions and perspectives of many individuals and organizations into a system that will provide the most benefit to the consumer while taking additional factors, such as budget restrictions, into consideration. When asked how his perspective differs from that of a service provider, a parent or an advocate, Hatch commented that he “tries to understand all three of the perspectives, and then tries to find what is fair and equitable— and more importantly—how we can get the results that each one wants.” Hatch provides a unique perspective that has evolved through personal experiences as well as through his work in the Legislature to provide Iowans with the services they need.

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Patti Todd's Perspective - A Parent Advocate

As a mother of a son who has autism, Patti Todd’s perspective has been shaped by focusing on the best ways to maximize the benefits her son receives as a waiver recipient in the state of Iowa. Patti and her husband, Mike, are the proud parents of Cassie, 18; Rachel, 16; and Jake, 14, who are all involved in their hometown of Storm Lake. Cassie and Rachel are active in sports at St. Mary’s High School, and Jake is a “very common sight at St. Mary’s games,” according to Patti, who feels that it is important to “incorporate him into the community for our family’s benefit and the community’s education.” Jake participates in several Special Olympic sports and enjoys guitar and drum lessons that serve as great music therapy.

As a parent advocate, Patti works to discover new opportunities for her son to move forward. She is continually searching for new therapies and providers, and will “never say never” when it comes to something she feels is important and beneficial to Jake. In July of 2011, Patti was appointed by the governor to the Iowa Developmental Disabilities Council (DD Council). As a person who is passionate about disability-related issues, Patti thought it made sense to give back by getting involved with the DD Council. As a parent advocate, Patti’s viewpoint may differ from others involved. “I don’t think of the services that my son receives as being the result of a policy,” Patti says. “I am a very bottom-line person, so I have always thought of the services as a result, not a process.” From her perspective, her responsibility is to take the results of policy decisions and determine the best ways to use them for her son and family. Patti feels her biggest achievements have come by incorporating Jake into family activities and continually pushing the envelope to see how much he can accomplish. “If I don’t make him a little uncomfortable, then how do I know how much he can accomplish?” Patti says. She continues to be amazed at how often she meets people who have close family members or friends who have autism or other developmental disabilities. She enjoys being a resource for them to ensure their children, family or friends receive the maximum benefits the services they receive will allow.

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Rep. Dave Heaton (R) - Mount Pleasant

Representative Heaton is from Iowa House District 91, representing all of Henry County and North Lee County in southeast Iowa. He is the co-chair of the Health and Human Services (HHS) Appropriations Subcommittee. He has been engaged in the mental health and disability service systems in Iowa for many years. 

When asked how his perspective as a legislator has been formed over the years, he said, “The perspective that a legislator has is that I gather information.” Heaton understands the role of the consumers and advocates as well. He points out that many individuals, groups and providers contact him on a regular basis with their agenda on how to improve the system. He then does his best to gather all the information he can to make informed decisions that make a better mental health and disability system in the state of Iowa. 

Representative Heaton has formed his perspective on the disability system in Iowa by visiting with Iowans, organizations, providers and others which allows him to directly see how the system works, where it doesn’t work, and what the best solutions are to make it better. “There is nothing better than seeing it first hand,” Heaton states. Heaton works every day to collect the information he needs to make decisions he believes best represent his constituents and Iowans.

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Sherri Nielsen - Disability Service Provider

My perspective on disability services in Iowa began forming at age 11 as I watched the battles my mother fought for my 13-year-old brother who lost his eyesight due to complications of juvenile diabetes. At that time in Iowa, the system was focused on the cannot’s and segregation. My mom had to fight for my brother to learn with his classmates, and have service providers who would focus on his abilities and create hope for him. She never lowered expectations or considered staying in the comfort zone—and neither did he. Now, working as a service provider has allowed me to see how hope, partnership and high expectations create solutions so people can live, learn, work and play as part of their communities. 

Disability services in Iowa should be based on the individual and not restricted by funding resources. My agency embodies this belief as we provide services to Iowans. Those services have been developed based on feedback from the people and families we support. They tell us what is needed to support them having independent and quality lives. Our consumers want to maximize their independence, so I do my best to ensure our staff and organization provide the maximum amount of independence to the consumers we serve.

As the system evolves, the bar for services must be raised. I want a system that values client choice and promotes innovation and creativity in service delivery. This can happen when partnership is encouraged between clients, funders and providers. This partnership will allow us to provide appropriate, individualized services to each person served. When those who fund the system invest in a system that creates choice and encourages independence, the return on the fiscal and human investment is exceptional. When Iowans with disabilities can achieve their goals and dreams, they will be able to live, learn, work and play in their communities.
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Sherri Nielsen is the President/CEO of Easter Seals Iowa. Easter Seals’ mission is to provide exceptional services to ensure that all people with disabilities or special needs and their families have equal opportunities to live, learn, work and play in their communities.

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