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April newsletter now available

April 30, 2010 by JoLynne Lyon

Parent-child play is good for development. Read all about it in the CPD's April NewsFlash.

Check out April’s NewsFlash, featuring the CPD’s multifaceted approach to autism and a fundraising campaign for the CPD’s new developmental playground, which will help provide support to the families of children with disabilities. We thank all conors and volunteers who have already contributed to this project and invite others to join in the effort.

Happy reading, and happy spring.

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April is National Child Abuse Prevention Month

April 7, 2010 by cpehrson

“Our children are our most valuable resource, and they need our support to thrive and grow into healthy, productive adults. During National Child Abuse Prevention Month, we renew our unwavering commitment to protecting children and responding to child abuse, promoting healthy families, and building a brighter future for all Americans.”

So stated President Obama on April 1, 2010 as he proclaimed April, once again, as National Child Abuse Prevention Month.  Since the 1980’s, the government has officially recognized April as Child Abuse Prevention Month.  Alarmed at the increasing rate at which children are abused and neglected and recognizing the need for innovative programs to prevent child abuse and assist parents and families affected by maltreatment, government agencies have committed themselves to raising public awareness of this disastrous issue.

This month is a time to raise awareness about child abuse and neglect and encourage individuals and communities to support children and families.  It is an opportunity for communities across the country to keep children safe, provide the support families need to stay together, and raise children and youth to be happy, secure, and stable adults.

The Child Welfare Information Gateway website is a place where you can learn more about what you and your community can do to support families and prevent child abuse.  They provide a Resource Guide and community resource packets that can be used during this month and year round.

Find out what your community is doing during Child Abuse Prevention Month and become involved in making a better life for children and families.

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Family support summit connects people with the services they need

April 2, 2010 by JoLynne Lyon

Leigh Ann Harrington poses with her sons at the Family Support Summit at Hill Air Force Base.

The CPD’s Military Family Support 360 Project had a big day this week, as it welcomed families and service providers to a summit where they could share information.

The Military Family Support Summit took place at Hill Air Force Base in Clearfield, Utah, offering information for the military families of children with disabilities. In addition to holding the summit, the Miliatry Family Support 360 Project will provide a single point of contact for families who typically move six or more times during a child’s school years. The project is a joint effort between Hill Air Force Base and the CPD at Utah State University, and it will focus on connecting  military families with special needs  to existing services.

Recent articles on the Deseret News and the Ogden Standard-Examiner highlight the event.

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Recognizing communities that are friendly to children with special health care needs

November 30, 2009 by JoLynne Lyon

Photo courtesy of Kids on the Move in Utah County, Utah.

Photo courtesy of Kids on the Move in Utah County, Utah.

The Star Communities program is recognizing inclusive communities that are doing a good job serving the families of children and youth with special health care needs. So far, 13 cities and counties have been identified, including Utah County and Yakima, Washington. Both are featured in the CPD’s NewsFlash newsletter for November.

Star Communities are good models of community-based service systems. They facilitate the integration of services and supports by encouraging a variety of programs to work together to meet the many, varied needs of children, youth, and families in the community.

ChampionsInC is sponsoring this recognition program because its mission as a national center of the Maternal and Child Health Bureau is to support communities in organizing services for families of children and youth with special health care needs. As a project at the Center for Persons with Disabilities’ Early Intervention Research Institute at Utah State University, ChampionsInC realizes that there are communities throughout the nation – probably even where you work or live – who are doing an excellent job with family-driven services. But they need you to help find them.

Some guidelines to look for in the community:
•    Families are partners in decision making;
•     Medical homes work in coordination with other services;
•    Children receive early and continuous developmental screening services;
•    Adequate financing ensures that families receive needed services;
•    Services and supports are easily accessed, coordinated, and culturally     competent;
•    Transitions throughout life happen smoothly.

If you know of a community that that is meeting some, or even all, of these guidelines and you would like them to receive the recognition they deserve, contact Cora Price at ChampionsInC: 800-887-1699.

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One medical home and one school make a difference for a family

November 12, 2009 by JoLynne Lyon

Note: This article, written by a mother of a child with special health care needs living in Cache County, Utah,  first appeared in the Champions for Inclusive Communities’ November 3 newsletter. It is part of a series focused on the experiences of individual families as they work to obtain community-based services for their children with special health care needs.

The experience in the hospital last year when my 9-year old daughter was first diagnosed and treated with diabetes was very overwhelming. We left feeling unprepared and lacked confidence to deal with her treatment. Luckily, our family doctor – our medical home – helped us through this initial scary phase. He helps coordinate my daughter’s care with her endocrinologist to ensure she stays healthy. He is very good at communicating with my child, and he keeps in regular contact with us.

I also had an interesting experience with the school system not long after my daughter’s diagnosis. I left a message with her school saying that my 9-year old child had been hospitalized and diagnosed with diabetes and asked if we could meet to discuss possible assistance for her. A staff member later left me a message, essentially saying there was nothing they could do. I knew that the school district should provide a health plan for children who require assistance because I have worked with children from the Up to Three program and have been an advocate for families in our school district. I called the secretary back and asked her if my daughter was the first child with diabetes to attend the school. She said that in the past there had been a couple of children, but their mothers came with them to school to help. When I explained that I would talk to the school district’s nurse, her tone changed and she wanted to excuse herself for not providing me with the information I needed concerning a health plan and further assistance for my daughter. She also asked me not to involve the school district’s nurse.

My point is that I know I could have eventually received the support and health plan I needed for my daughter in that first school, but I could never change people’s attitudes towards parents and children with special needs. My daughter was already dealing with a life-changing event – an incurable disease, paired with the stress over not fitting in or being liked. I did not want to add eye-rolling, non-empathetic behaviors that would make her feel like a “chore” to anyone.

I decided to home school her for few months, but it did not work so well because I still was working, both away from and at home, making all the meals, cleaning, doing laundry, learning about diabetes, grieving, and helping other members of my family deal with the situation. I was tired! I could not leave my job because we needed the health insurance. So I prayed for help and was directed to Summit Elementary School.

My daughter and I were just visiting Summit one day when a lovely woman, who was so sweet and friendly, stopped in front of my daughter, shook her hand, looked into her eyes, smiled, and said “hello sweetheart.” My daughter said hello back and smiled and the lady hugged her. This sweet lady, the school secretary, asked both of us if we were interested in enrolling in Summit. I explained that I home school and that I was just looking and maybe signing up for a math class or a gym class. I explained that my daughter has diabetes Type 1 (very different from Type 2 diabetes). She said “me too” and showed her insulin pump to us. Then she added that in fourth grade there is a little boy with the same diagnosis whose teacher was well trained and had taught other children like my little one before. This little boy’s mother also teaches fifth grade at Summit and knows all about the condition. She has even done shots for other children.

Within two days my daughter was enrolled full time in Summit Elementary. Soon after, we had a meeting with the district nurse (who was well prepared for our family health plan), the school principal, her teacher-to-be (who is excellent), and the fifth grade teacher and mother who was and is an angel. This woman took the time to share a tear with me, she read a book called “Taking Diabetes to School” to my daughter’s classmates, she helped her feel welcome, and she also gave her a backpack equipped to care her insulin supplies along with a Teddy bear name Ruffes who has diabetes. My girl loves her bear and gives him shots. She comforts him and reassures him at night.

All of this has been so helpful. Everyone I have seen at Summit seems to be happy and seems to love their job. In the hallways, children are greeted and noticed by teachers and the two super secretaries keep good track of her blood readings. Summit Elementary gave us the support we needed.

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