The Central California Collaborative meets regularly in Fresno and Watsonville. Please contact us to join. All are welcome.

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Sue Coggins: scoggins@cvrc.org

Jack Morrison: JMorrison@CHILDRENSCENTRALCAL.ORG

Lori Butterworth and Devon Dabbs: news@childrenshospice.org

Kids with life-threatening illnesses get new support
by Sue Coggins

Fortunately, most of us can only imagine the terror that grips a family when learning that their child has a life threatening condition. How will they handle the emotional, spiritual, financial and care needs for their child, and perhaps other children, while seeking a cure? They are thrown into a whirlwind of appointments, tests, treatments, possibly surgeries and multiple hospitalizations immediately after learning of the illness. Nothing in their lives could have prepared them for all the decisions that need to be made and made quickly, often in a crisis.

About 300 families in our Valley are living in these situations each day. Support can come from family, friends and their community but where is the professional help they need? Who helps them know the difference between a normal symptom and an emergency? Who is available to them at 2:30 in the morning when their child is anxious and unable to sleep or when their own fear becomes unbearable?

Wonderful hospice programs exist in our communities that provide in-home supportive care with physicians, nurses, social workers, chaplains, volunteers and others. They are experts in the care that is needed: assessment and treatment of symptoms including pain, education about caring for the child, emotional and spiritual support and help with the day to day needs of the family with assistance from trained volunteers. However, hospice regulations require that a doctor certify the child’s life expectancy is less than 6 months and they cannot be seeking any treatments toward cure.

What? A parent must stop hoping that the next treatment is going to be the one that works? Most parents are unable and unwilling to give up hope. Who can blame them? No parent should have to agree to give up hope so that they can get the help they need.

I am here to tell you that hope is on the way. After 7 years of intense lobbying for changes in the laws and regulations, The Nick Snow Children’s Hospice & Palliative Care Act of 2006-Assembly Bill 1745 was signed into law. The law directs California Department of Health Services to apply to the Federal Centers for Medicare and Medicaid Services for a waiver. The Waiver allows Hospice & Palliative Care Services for children without them forgoing concurrent therapies and treatments. The Waiver is almost ready to be submitted by the State but it may be 2 to 3 years before the Valley will be a participant.

We are not waiting in the Central Valley. Representatives from Hinds Hospice, California State University at Fresno, California Children’s Services, First 5, Fresno County, Children’s Hospital Central California, Central Valley Regional Center and others began meeting in April. We learned from Nancy Hinds and Susan Willoughby how coordinating services among agencies allowed a young boy to continue to receive treatments at home while his family got the support they needed. He was able to celebrate his birthday at home; several days later he died surrounded by his family.

Lori Butterworth shared about the outreach of the nonprofit Children’s Hospice and Palliative Care Coalition, which has been working on the implementation of the waiver. We learned that more than 1, 000 professionals, nationally are “dedicated to creating a medical system that works to cure disease, provides compassionate family-centered care and respects a child’s right to live as normally and joyfully as possible..”
We discovered that parts of our Valley do not have care available to them in their homes and that children die in the ambulance on the way back to the hospital.

In case you think hospice or palliative care programs must be expensive, please consider that hospice is reimbursed at $150.00 a day, while a ride to the Emergency Room by ambulance is between $650.00-$1,000 and the Emergency room visit is at least $365.00. A day in the hospital is around $2000.00 a day.

Most parents want to care for their children at home whenever possible. Children want to be tucked into their own beds at night. They want to be greeted by parents, brothers and sisters and even the dog in their own bed in the morning. If they’re sick, they want the comfort of family and of “their stuff,” in the environment they know. And when they die, they want to be surrounded by their loved ones.

Those who met in April began laying the groundwork for the Central Valley Partnership for Children. They drafted a mission statement: “our goal is to appropriately serve the needs of children with life limiting illnesses and conditions and to support their families.’

We can do this. The Central Valley is truly the “Heart” of California. We show our heart every day by caring for our community, our neighbors, for helping those who are can use a helping hand, for playing with those who are ready to play, and for stepping up every time. We already do this so well; let’s continue with our children.

You are invited to join us. Please contact Sue Coggins, R.N. at scoggins@cvrc.org to receive information about the next meeting.

Fresno Bee May 9, 2008

Sue Coggins, R.N.
Central Valley Regional Center
Director of Health & Assessment Svcs
4615 N Marty Ave
Fresno, CA 93722
(559) 276-4353