This post first appeared in the Champions for Inclusive Communities newsletter on April 30, 2010.

Richard Roberts

Dear Readers,

After thirty years of continuous program funding through the U.S. Maternal and Child Health Bureau’s Division for Children with Special Health Care Needs, I will be retiring from Utah State University on July 31, 2010. I have been so fortunate to work with many people who have had connections with our centers and grant efforts over this time period. So many changes have occurred. As a national group of concerned parents, families, and program officers at the state and federal level partnering with National Centers and grantees, we can see a real difference in the lives of the children, youth, families and parents with whom we work alongside.

The progress and outcomes are stunning. State programs which used to be hidden in a large bureaucracy no longer work with “crippled children” and are in the midst of huge systems change processes to create broadly based initiatives and partnerships. In doing so, we ensure that what the system has to offer is the very partnership that parents, youth, health financing, education systems, and private sector hospitals and clinics are seeking. We are all moving community-based systems of care forward to serve children with special needs and their families. Obviously we are not there yet; but together, we have made what might have been seen as impossible in 1983 into the expected norm for all children now in 2010.

When I signed onto this journey, 2010 seemed like a very long time line. We have learned much as a concerned and committed group comprised of parents, kids, teenagers, service and support providers, researchers, program managers, state legislators, school teachers and administrators, faith-based support programs, hospital administrators, and the list goes on and on.  WOW, is about all I can say as I sit back and reflect on this movement. Some of the early birds in this effort are still at it, pounding the pavements along the way to keep the momentum moving forward.  Some have retired after having worn themselves out by never even thinking, “no, we can’t do this.”

When I think of the mentors who set me straight over the last thirty years, I am so thankful for their patient, honest, and open exchanges of how to get there, and about what they thought I should be doing along the journey. In the first conference that I was privileged to sponsor in Hawaii in 1984, participants included family members, researchers, program providers, and state and federal program officers.

Retiring does not mean I won’t still be active; but I will be active in different ways, pushing community-based systems of care as they are the foundation of making things work. Thank you all for your support of all of our collective efforts. Keep the stories of successful community-based service systems flowing so that we, as a collective family, can continue to champion the cause and recognize the progress being made by pushing those boulders out of the way. Keep a lookout for the book on these communities. I don’t think we can do a movie!

Sincerely,

Richard Roberts
Director, Champions for Inclusive Communities
Director, Early Intervention Research Institute, Center for Persons with Disabilities
Utah State University

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.

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.

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.