If you would like to fax your letter on your company’s letterhead, please fax to: 

Fax: 916/446-9109 

Thank you.

Date: January 23, 2008

To:

Hon. Denise Ducheny, Chair of Senate Budget Committee
Hon. John Laird, Chair of Assembly Budget Committee
Hon. Elaine Alquist, Chair of Senate Budget Sub #3
Hon. Patty Berg, Chair of Assembly budget Sub #1

From: Children’s Hospice & Palliative Care Coalition

Subject: OPPOSE MEDI-CAL & CCS PROVIDER RATE CUTS

The Children’s Hospice & Palliative Care Coalition and our Public Policy Advisory Committee strongly object to the proposed State Budget reductions to the Medi-Cal and California Children’s Services (CCS) physician provider rates.

The California Children’s Services program, in particular, provides specialty care to children with leukemia and other childhood cancers, as well as other diseases such as cystic fibrosis, pediatric AIDS and sickle cell anemia. A cut in physician reimbursement, when California already has some of the lowest reimbursement rates in the nation, will further compromise access to specialists here. Many children are already experiencing one to four months of delays just to get into a see a specialist in California.

It is devastating when families are given a difficult medical diagnosis for their child. Cutting payments to the specialists who are specifically trained to meet the needs of these patients is quite alarming to us.

Thus, we are strongly opposed to the 10% Medi-Cal and CCS provider rate cuts and urge you to reject these proposals.

Department of Health Care Services
Special Session BBR TBL – RN 08 00367
By Proposal

One Month Delay in Payments (DOF Issues # 91 & 99)
Section 41 (WIC 14041.1)

Reduce Provider Payments by 10% (DOF Issue #101)
Section 46 (WIC 14105.19)

Increasing the Federalizing of the State-Funded Programs through the Safety Net Care Pool by 10% (DOF Issue # 102)
Section 52 (WIC 14166.225)

Reduce Non-Contract Hospitals by 10% (DOF Issue # 103)
Section 53 (WIC 14166.245)

Reduce Long Term care Rates by 10% (DOF Issue #104)
Sections 44 & 45 (WIC 14105.06 – Repeal & Add)

Reduce Demonstration DSH Private Hospitals and Non-Designated Public Hospitals by 10% (DOF Issue #105)
Sections 50 & 51 (WIC 14166.115 & WIC 14166.165)

Reduce Benefits to the Federal Minimum – Chiropractors, Creams & Washes, Acupuncture, Adult Dental, Audiology, Optometrists, Opticians/Optical Labs, Podiatry, Psychology, Speech Therapy (DOF Issues #106 through 115)
Section 47 (WIC 14131.10)

Stop Paying Part B Premiums for Unmet SOC Beneficiaries (DOF Issue #116)
Section 37 (WIC 14005.11)

Eliminate CEC for Children and Restore QSR for Parents and Children (DOF Issues #117 & 118)
Sections 38, 39, & 40 (WIC 14005.25, WIC 14011.16 & WIC 14011.17)

Reduce CCS Case Management by 10% (DOF Issue #119)
Sections 15 & 42 (HSC 123957 & WIC 14094.5)

Reduce EPSDT Case Management by 10% (DOF Issue #120)
Section 17 (HSC 124071)

County Administration (Elimination of CNI-Based COLA to Counties, Estimate Caseload Growth, Reduction of County Administration Base) – (DOF Issues #121, 122 & 123)
Sections 48 & 49 (WIC 14154 & WIC 14154.01)

Reduction in Cost Reimbursement due to FI Transition to EMT in Print, Postage, & Parcel Cost Reimbursement (DOF Issue #124)
Section 43 (WIC 14104.93)

CCS Reduce Provider Payments by 10% for Non-Contract and 10% for Other Provider Rates (DOF Issue #126)
Sections 14 & 16 (HSC 123952 & HSC 123958)

GHPP Reduce Provider Payments by 10% for Non-Contract and 10% for Other Provider Rates (DOF Issue #127)
Section 19 (HSC 125152)

Rural Health Services Delivery (DOF Issue #130)
Section 18 (HSC 124400.01)

Partnering for Children: A New Campaign to Raise Awareness and Funds to Support Children with Life-Threatening Conditions

(New Orleans, LA) – The National Hospice and Palliative Care Organization, Children’s Hospice and Palliative Care Coalition, and the National Hospice Foundation announced on Thursday, November 29, Partnering for Children, a national awareness campaign to help get the word out about compassionate, family-centered healthcare for children with life-threatening conditions. The announcement was made in

New Orleans at the National Hospice and Palliative Care Organization’s (NHPCO) 8^th Clinical Team Conference by NHPCO President Dr. Don Schumacher and Ms. Melissa Gilbert, the director, actor, producer, and activist who currently serves as board president of the Children’s Hospice and Palliative Care Coalition (CHPCC).

“Working together through our Partnering for Children campaign, we can make more people aware of the possibilities that exist to improve care and support for children and their families,” said Ms. Gilbert. “It’s time for all of us to recognize that we can make a profound and lasting difference by joining together to bring comfort and hope to children and families when they need it most.”

Partnering for Children is reaching out to compassionate people nationwide with messages and suggested actions to raise awareness of the possibilities that exist to improve care and support for children and their families and to let families know that they are not alone on this journey.

“I am honored to partner with Children’s Hospice and Palliative Care Coalition,” said Dr. Schumacher. “I know that working together we can raise awareness about the importance of pediatric palliative care, which is dedicated to ensuring that seriously ill children and their families get the compassionate medical, emotional, and spiritual support they need to hold on to hope, whatever form it takes.

Ms. Gilbert, who visited yesterday with families in New Orleans added, “In an ideal world, the words ‘children’ and ‘hospice’ would never go together, but unfortunately sometimes they do and when they do, we owe children and their families compassionate, family centered care.”

Partnering for Children is focused on engaging partners in an effort to improve healthcare for children with life-threatening conditions and increase support for their families.

Activities include:

Community Engagement

Free outreach materials and engagement strategies to engage parents and healthcare providers in efforts to raise awareness about pediatric palliative care and hospice.

Resources for Parents, Siblings and Caregivers

Free online information for families and caregivers to provide support and to help them find the services they need.

Virtual Resource Library

An online catalog of educational resources that palliative care and hospice providers can use to create or enhance their care delivery to seriously-ill children and their families.

National Media Campaign

Communication tools to engage members of the media, publicize outreach activities, raise funds and gain credibility.

In conclusion, Dr. Schumacher said, “It’s time for each of us to recognize that we can make a profound and lasting difference by joining together to bring comfort and hope to children and families when they need it most.

Partnering for Children is a national awareness campaign to help get the word out about compassionate, family-centered healthcare for children with life-threatening conditions. The campaign is reaching out to parents, healthcare professionals, the media and funders about the benefits of palliative care and hospice. Partnering for Children is a collaborative effort between the Children’s Hospice and Palliative Care Coalition, the National Hospice and Palliative Care Organization and the National Hospice Foundation – and you. To learn more about Partnering for Children and how you can get involved, visit www.partneringforchildren.org.

Contacts:

Jon Radulovic, NHPCO
Ph: 703-837-3139 jradulovic@nhpco.org

Ann Andrews Morris, CHPCC
Ph: 202-746-6091 ann@childrenshospice.org

Visit www.partneringforchildren.org.

The Children’s Hospice and Palliative Care Coalition (CHPCC), is a dynamic social movement that works to overcome obstacles to care for children with life-threatening conditions and their families through collaboration with children’s hospitals, hospices, home health, social service, individuals, and grassroots agencies. CHPCC advocates for policies and programs that address the harsh realities faced by seriously ill children–particularly their need for coordinated, comprehensive support that integrates medical, psychological, social, emotional, and spiritual services from the point of diagnosis throughout the course of treatment.

Since Lori Butterworth and Devon Dabbs founded CHPCC in 2001, I have been awed by the tremendous progress they have made in revolutionizing end-of-life care for children. Their three core programs are summarized as follows: (1) Compassionate Reimbursement Initiative for Children (CRI); a California State policy change initiative that effectively investigated and brought awareness to the shortcomings of existing hospice benefits as they applied to children and successfully advocated for systematic change. Through CRI, CHPCC is now working with California’s Department of Health Care Services (DHCS) in the implementation of a new Pediatric Palliative Care Benefit package which can dramatically improve access to end-of-life care for thousands of California’s children; (2) Partnership for Children; based upon recommendations from the Institute of Medicine report “When Children Die: Improving Palliative and End-of-Life Care for Childen and their Families” (2002), CHPCC designed the Partnership for Children, a model program offering critical care coordination in a family-oriented setting for children 0-21 with life-threatening conditions and their families on California’s Central Coast; and The Partnership for Parents (www.partnershipforparents.org), the first and only bilingual web resource addressing the unique needs of parents with seriously ill children.

It is for these programs that I wish to nominate CHPCC for the CAN Achievement in Innovation Award.

Innovative programs and how they advanced our mission

Palliative and hospice care, according to the Children’s International project on Palliative/Hospice Services, is the science and art of lessening physical, psychosocial, and emotional and existential suffering. Palliative and hospice care is assistive to children and families whether the overall goals of care are to cure, prolong life, maximize the quality of life that remains or ease the pain of bereavement.

According to Dr. Marian Dalsey, Chief, Children’s Medical Services, it is estimated that nearly 17,000 California children aged birth to 19 are living with life-threatening illnesses and could benefit from these services. While Medi-Cal includes hospice benefits, they are rarely used. In 2005, only 422 children accessed hospice benefits because of harsh life expectancy restrictions, the requirement to cease curative treatments, and other systemic issues.

Successfully addressing these complex problems in California, CHPCC rallied lawmakers, families, and community based organizations and effectuated the passage of The Nick Snow Children’s Hospice & Palliative Care Act of 2005—a landmark step toward allowing seriously ill children to access hospice and palliative care without giving up curative treatment. CHPCC is currently consulting with DHCS on developing and implementing these policy changes in the form of a Pediatric Palliative Care Benefit package due for release in early 2008.

Drawing from the Institute of Medicine report that comprehensive pediatric palliative care is impossible without a designated care coordinator, the Partnership for Children, based in Watsonville, offers critically ill children and their families’ support through two bilingual Nurse Care Coordinators. The Nurses forge intimate relationships with families and provide a case-specific community-based Plan of Care which identifies local services and specialty resources that best serve the family from diagnosis—throughout the course of treatment—and if the child dies into bereavement. By integrating care with children’s hospitals such as Lucile Packard Children’s Hospital and UCSF, local hospitals and agencies, families receive medical, home care, or palliative care support; pain and symptom management for their child; transportation assistance to and from treatment; emotional and spiritual support for the child and family; written and verbal translation assistance; resolution of practical needs, such as respite; assistance with educational issues including integration into the classroom and tutoring; emergency financial assistance; bereavement support before and after death; as well as funeral assistance. Helping each family navigate their way through the medical system, the insurance paperwork, and the emotional trauma of a child’s life-threatening illness, Partnership for Children establishes continuity and promotes relative ease and comfort during a time wrought with uncertainty.

As a central hub for community-based agencies such as Central Coast Visiting Nurses Association, Hospice Caring Project, Make-A-Wish Foundation, Jacob’s Heart Children’s Cancer Association, Catholic Charities, Heartland Hospice, Pediatric Services of America, Santa Cruz Visiting Nurses Association, Santa Cruz AIDS Project, Watsonville Hospital, Natividad, and specialty hospitals (UCSF Medical Center and Packard Children’s Hospital at Stanford), the Partnership for Children also effectively streamlines communication and expands the capacity of community-based agencies as they work to alleviate the extraordinary burdens faced by children with life-threatening conditions and their families on the Central Coast.

The Partnership for Children is essential to CHPCC’s ongoing advocacy efforts. Now institutionalized by DHCS as an endorsed replicable model for the State, the Partnership acts as a data collection site for the State and tracks the financial, medical, and social outcomes of a local, rural care coordination model as it impacts the children, families, local providers, and specialty pediatric care centers.

The lack of a centralized resource designed specifically to help parents handle the trauma of a child’s life-threatening illness prompted CHPCC to create the Partnership for Parents web resource (www.partnershipforparents.org). The site addresses the needs of parents wherever they are in the trajectory of their child’s illness or through their bereavement process. Topics include: how to talk your child’s doctor, making sense of medical information and terms, preparing for crisis, and coping with grief, among others. Currently offered in English and Spanish, CHPCC is working to expand the language capacity of the site.

By providing these previously non-existent services, CHPCC is overcoming barriers to comprehensive and coordinated hospice and palliative care for children and families.

Through CHPCC’s efforts, pediatric hospice and palliative care is being institutionalized in our local and statewide community. Measurable outcomes to this end include:

I. Implementation of the Nick Snow Children’s Hospice & Palliative Care Act (2006), the first step in increasing access to hospice and palliative services for an estimated 17,000 of California’s children.
II. Launch of the Partnership for Children in September of 2005, a community-based palliative care coordination program recently institutionalized as a DHCS endorsed model in California. Provided 5,000 hours of direct care coordination to 150 families. Provided over 350 hours of capacity building and education to local agencies addressing the unique needs of seriously ill children and their families.
III. Launch of the Partnership for Parents web resource in April 2005: 40,430 registered visits, and a corresponding 24,432 visits registered for the Spanish language site (padresconpadres.com).

Delivery of Service

The services offered by CHPCC through its three core programs are non-duplicative and unique in both their approach and delivery. Each was designed with the inclusion of parents, providers, and policy makers in an effort to address an unmet need either on a national, statewide, or local level. Through research, advocacy and strategic alliances, CHPCC has created a comprehensive pediatric hospice and palliative care benefit package supported by DHCS. The Partnership for Children is effectively bridging chasms that have existed between seriously ill children and their families, and community-based and specialty care providers, ensuring a seamless continuum of care where none previously existed.

The Partnership for Parents, the only resource of its kind, offers information that is difficult if not impossible to find elsewhere. Through providing these services, CHPCC has successfully identified the areas where previous services fell short and has adequately met these unique and crucial demands on behalf of seriously ill children and their families. CHPCC’s systematic approach to dealing with the root causes of the program through CRI; addressing gaps in community-based service through the Partnership for Children; and, offering immediate and comprehensive support through the Partnership for Parents is creating a safety net for children with life-threatening conditions in California and establishing a replicable model that is already drawing the interest of a national audience.

Partnership for Children Nurse Care Coordinators Sophia Schultz, RN and Shoshana Spielman, RN were honored with the Kendall Inspirational Award by the Hospice Foundation. Because of their incredible dedication to children and families, Lisa Buell, mother of Madison Buell who died at age two, nominated Sophia and Shoshana. Please take a moment to read Lisa’s touching nomination…

By Lisa Buell

When our first daughter Madison was born, a visiting nurse came to our home for a traditional follow-up visit. She was kind and compassionate, full of information and resources, and by the time she left, I felt like she was a friend. Five months later, our beautiful baby was diagnosed with a cancerous tumor in her pelvis. Our lives were never the same. My partner and I spent much of our time at the hospital dealing with Madison’s treatment regime. Once she was home, we provided her nursing care ourselves; the nursing care; blood draws, shots, hyper alimentation, dressing changes, and IV antibiotics. We managed insurance eligibility issues and made certain there was authorization for each costly procedure.

We also experienced the joy of parenting. We read to her, sang, danced, and played all the silly games parents do. As Madison’s first year of treatment came to a close, her doctor suggested that we hire a visiting nurse to help alleviate some of the burden of Madison’s round-the-clock medical care. We agreed. The day came and our visiting nurse arrived. What a stroke of luck! She was the very same lovely woman who had befriended us after Madison’s birth.

As we explained Madison’s illness and her care requirements, this same nurse who had been so confident and full of enthusiasm a year earlier, was visibly shaken. “I usually don’t do this type of nursing,” I remember her saying. She looked on as we changed our daughter’s dressings in the usual manner, one of us holding her arms over her head while the other did the cleaning and bandaging—both of us singing You Are My Sunshine.

When we finished, a heavy silence fell over the room. We looked over to find the nurse wiping away tears. Over and over, she said, “I don’t know how you do it, I just don’t know how you do it.” Frankly, I didn’t know myself, but seeing her fall apart like that was terrifying–if she couldn’t do it, how could we! The visiting nurse volunteered to drop Madison’s blood sample to the lab for us that day. She was due to return in a few days. We never saw her again.

I remember wondering what she meant that day when she said “I usually don’t do this type of nursing.” Now I know what this type of nursing means. It means assessing the child/patient and the family, coordinating care, communicating with the parents and extended family, advocating, and being willing to have the difficult conversations. It means being trained in port care, pain management, ventilators, hyper alimentation, and blood draws. It means taking time to sit and talk, to remember birthdays, and to arrange rides and respite. It means holding a dying child in your arms. It also means having the ability to hold reality and acceptance in the one hand, and the family’s hearts in the other. That visiting nurse was talking about a very unique person: a children’s hospice nurse.

Only an exceptional human can be a children’s hospice nurse and we are blessed to have two in our community, Sophia Schultz and Shoshanna Spielman. Combined they have over thirty-five years of hospice nursing experience, the majority of which has been spent caring for seriously ill children and their families. Recently, I sat down with these amazing women to ask them about their professional and personal lives. “It’s just in our blood, it’s a part of us,” Sophia explained. They told me that when they tried to take a break and do other kinds of nursing, they were drawn back into it. “Once you have cared for one child with a life limiting illness, suddenly you’re considered the expert. You are assigned all of these kinds of cases because you can do it, and nobody else wants to–that’s how I started so many years ago,” said Shoshanna.

Though I was trying to learn more about them, they steered the conversation back to their main concern in life: how they could better serve families like ours. They began to ask me questions. What was our biggest challenge in caring for Madison? What would we have liked to have happen differently? What worked and what didn’t? Their passionate and selfless commitment to improving care for children emerged again.

In 2005 the Children’s Hospice and Palliative Care Coalition launched the Partnership for Children program, a rural care coordination program serving critically ill children and their families on California’s Central Coast. Shoshanna and Sophia were quick to sign on. They have been effectively managing the day-to-day needs of some forty-five families, juggling treatment schedules, transportation needs, and most important, providing a compassionate, supportive presence for families challenged by the nearly unbearable trauma of caring for a sick child. Shoshanna and Sophia are also bilingual and sensitive to cultural differences. They help families with limited English to navigate the maze of medicine by providing translation support and advocacy. Many other health care professionals in Santa Cruz and Monterey have benefited from the pediatric training that Shoshanna and Sophia are providing. They have worked tirelessly to develop effective relationships between providers and families, easing communication at every level of care.

Both Shoshanna and Sophia are dedicated and inspired professionals on the forefront of the pediatric and palliative care movement doing the work that many in the nursing field would not, or cannot do. They provide comprehensive care to families in crisis, bringing them hope—no matter what form hope may take. These two women are empowering and supporting families to be present during a sacred time. Through their example and contribution, these two women have laid the groundwork for improved care for critically ill children from throughout California.

It is with a full and grateful heart that I nominate them for the Hospice Foundation award. Shoshanna and Sophia have already received the gift that working with our children and families gives. I am hopeful that they can be recognized with a visual marker for the exceptional care and comfort they provide. Their deeds will be remembered.
Warmly,
Lisa Buell

CHPCC is receiving the award for the development and implementation of a new pediatric hospice and palliative care benefit for California which is modeled after the organization’s Partnership for Children Program. Especially highlighted is CHPCC’s creative approaches to better serving children with life-threatening conditions and their families.

Co-Founders and Executive Directors Lori Butterworth and Devon Dabbs were nominated by Gay Walker, Director of Trinity Kids Care Hospice in Torrance, California.

Click here to read nomination. 

We often mean well by saying “call me if you need anything,” but the reality is that it is best to offer something specific you can and will do and then just do it. This is especially true when a family is dealing with a serious illness or a death. There are tangible things you can do to help ease their burden…

• Make a meal that is easy to reheat
• Invite siblings over to your home to play so mom and dad can have some time to themselves
• Run errands
• Pick kids up from school or drive them to their daily activities
• Make sure that the house is stocked with the kids’ favorite cereal or other familiar comfort foods
• Do yard work
• Clean the house
• Mow the lawn
• Do the laundry
• Honor each family member’s grieving experience and expression – recognizing the differences is a true gift.
• Offer to go with the parents to help plan or hold their hand while they make arrangements for the memorial service and/or funeral
• Offer to assist the family in preserving mementos. Let the family set the timetable for this as they need to discover the right timing for themselves
• Send a note or a letter (see Those Difficult Cards & Letters, page 29)
• Remember them during holidays and birthdays, mother’s/father’s days. Notes and letters that continue over time are priceless. Don’t worry about “reminding them of their child” they are already remembering and often grieving for their child during these milestones and will be comforted to know that their child is remembered by others.

Grief is the natural reaction to any loss. There is no “right” way to grieve, but when we feel grief it is important that we, both as children and adults, have the ability to find the strength within us to express our grief in ways that heal us and help us grow into Loving human beings.

We all experience loss throughout the course of our lives. Children moving into a new home experience the loss of friends at the old school and the comforts of a familiar home. Children experience loss when parents divorce or grandma dies. They can feel loss as they move from childhood into adolescence; when it is no longer cool to play with dolls or other “childish” toys or games. When a child is sick, regardless of whether the condition is minor or lifethreatening, parents experience profound loss. Grief is the natural reaction to any loss. There is no “right” way to grieve, but when we feel grief it is important that we, both as children and adults, have the ability to find the strength within us to express our grief in ways that heal us and help us grow into loving human beings. This is where a chaplain can help.

Many people have an outdated view of what a Chaplain is and what a chaplain does. I have seen fear in people’s eyes when I am introduced as the chaplain because they think I am there just to “give last rights.” A chaplain can be anything from a pastor helping a family with their religious rituals, to a friend providing a shoulder during a difficult time. A chaplain is not necessarily religious and we do not promote any particular religion or faith. Our job can be to reconnect you and your family back to a lost faith or help you find a faith that works for you. Mostly a chaplain can help you find hope and strength during your greatest hour of need, helping you come to terms with loss, find and redefine hope and healing.

If you have a loved one who is seriously ill or have spiritual need and would like to know more about chaplaincy services, you can call me at the Central Coast Visiting Nurses Association.

Phone: 831.758.8243.

One of the most intriguing qualities of extraordinary people is that they often don’t feel that they are special. As they transform the lives of those around them, they say they are just doing what they have to do. Margaret Mikol is one such hero. In 1978, her daughter Julia was born with severe combined immunodeficiency, which required her to be kept in a completely sterile hospital environment–like the “boy in the bubble.” When Julia was 3 months old, she had a bone-marrow transplant that left her with a functioning immune system but unable to breathe on her own. Her hearing was impaired as well. She spent the next two years in the intensive-care unit at Memorial Sloan-Kettering Hospital in Manhattan.

Margaret moved into the hospital with Julia; her husband Yves continued working back home in Maryland and commuted to New York City on weekends. Julia’s hospital bills were about $350,000 annually. The Mikols quickly exhausted their medical insurance and had to rely on Medicaid. Caring for Julia at home would have been about $50,000 a year, but while the Federal Government would reimburse hospital care, it wouldn’t cover the cost of caring for a child at home.

Determined to create something closer to a normal family life for their daughter, the Mikols applied to a new federal program that allowed Julia to retain Medicaid coverage while being cared for at home. After a lengthy bureaucratic struggle, Margaret and Yves became the first parents in New York and the second parents in the nation to take home a child on life support. “The process transformed my personality,” says Margaret. “I had been a shy and timid person, and I became brassy and obnoxious. I changed into a beast to protect my child.”

For the next five years, the Mikols did everything they could to give Julia a normal childhood. But when Julia’s condition worsened, the 8-year-old refused the recommended heart-and-lung transplant, and her parents reluctantly agreed with her decision. Before her death, Julia asked her mother to promise to help other children. “You got me home,” she told Margaret in the sign language she used to communicate. “You’ve got to get them home too.”

Sick Kids Need Involved People (SKIP) is the fulfillment of that promise. The organization has helped more than 7,000 families deal with the myriad issues that come up with home care for children on life support as well as those battling cancer, HIV/AIDS, sickle-cell anemia, muscular dystrophy, cerebral palsy, autism and other conditions. Margaret and her staff of 250 help families navigate the hospital, insurance and Medicaid systems; assist them with school and housing issues; and counsel parents on how to care for the healthy siblings of a sick child.

Some SKIP clients, like Amy Goldman Putman, are relatively fortunate. Her son Jacob was born with serious lung disease and related complications. For the first few years of his life, he was dependent on a respirator and needed a feeding tube and round-the-clock nursing care (he threw up 18 to 20 times a day), all of which kept him going in and out of the hospital. Putman thought she was on the verge of a nervous breakdown. “When Jake was born, the world as I knew it disappeared,” says Putman. “Margaret knows the patient’s rights, comes up with a plan, tells you what you need to do and somehow makes it happen,” Putman says. “But most important, she gives you hope.” Jacob, now 14, is able to participate fully in school and recently traveled to Europe.

Other parents like Claudine Votto, the mother of four autistic children–4-year-old triplets and a 3-year-old son–fear that their children will need assistance throughout their lives and worry about who will help them get it. “I called so many agencies looking for help, and SKIP was the only one that even called me back,” she says. But there is a waiting list of thousands more families that SKIP, on its shoestring budget, cannot take on without additional resources. Margaret hopes one day to be able to build a clinically staffed residential community. “These families need a respite; they never get a break. They need to be supported in this effort,” she says. “Yet it is just indescribable how hard we make it for them. There is so much need wherever you look–all you need is a heart.” A heart like Margaret Mikol’s.

Melissa Gilbert has been hard at work trying to get The Nick Snow Children’s Hospice & Palliative Care Act, a Federal waiver of Hospice eligibility requirements, passed in the California Senate. Melissa revealed that “Right now, a child has to qualify (to receive Hospice care)…One of the problems is that…children, just by their nature, will fight more and, many times, will get better. However, if a family tries to go for new treatment, Hospice, their entire network of support, is taken away.”

Fortunately, the Children’s Hospice & Palliative Care Coalition is devoted to helping families with seriously ill children prepare for what may come. “I often tell people the words “children” and “hospital” shouldn’t go together,” says Melissa, “but they do. Children should be allowed to pass on with grace, peace, and dignity. It should be just as revered an occasion as when they are born. The support that Hospice provides is invaluable.”

Melissa, now a member of the Children’s Hospice Board of Directors, doesn’t want to be “just a spokesperson”. She wants “to be there with the children and know what they are going through,” so she enrolled in an End of Life Nursing Education Consortium, a seminar that teaches Pediatric Palliative Nurses end of life care. “I don’t know everything, but I’ve learned a lot about what it takes…Now, I’ve begun the quest to educate people.”

Devon Dabbs & Lori Butterworth, co-Founders of the Children’s Hospice, applaud “the incredible difference Melissa has made in the lives of seriously ill children and their families on behalf of Children’s Hospice & Palliative Care Coalition.”

Devon and Lori first met Melissa at an event for children with cancer. When Melissa learned of the Children’s Hospice bracelet campaign to raise awareness, she was among the first to get the bracelets on the wrists of her family and friends, including George Clooney, Jennifer Garner and Johnny Depp, who, inspired by the bracelet’s “profound simplicity,” wears his everyday.

Melissa credits her family with helping her find balance. Married to actor, Bruce Boxleitner, and mother to four sons, she makes it a point to spend as much time with her family as possible. “Monday nights we are together no matter what…We have incredible conversations. I’m very blessed.”

It’s the children she’s met through the Hospice, though, that keep her moving forward. “(They) have taught me such valuable lessons about what is to come,” she shares. “Children of all religious backgrounds tell me detailed stories (with) many common themes. It’s so profound and they believe it so strongly that I cannot help but believe it, too.”

That belief drives Melissa and the rest of the amazing staff at the Children’s Hospice to help give the children and their families the wings they need to soar, whether it is here on Earth or into their next destination.

Please take a moment and visit www.childrenshospice.org to learn more about the Children’s Hospice and The Nick Snow Children’s Hospice & Palliative Care Act. While you are there, help the kids by ordering a bracelet.

Mac Duffy has been a storyteller for over 15 years as performer, writer, director, and puppeteer. For more information on his “Adventures with Mac Duffy – Interactive Storytelling for the Whole Family”, visit www.macduffy.com.

A Place to Turn When A Newborn is Fated to Die

A perinatal hospice program helped Jill Kilibarda prepare for the birth of her severely ill daughter Alaina.

Click Here to View Video

By NEELA BANERJEE

Published: March 13, 2007

MINNEAPOLIS — The day after Alaina Kilibarda was born, her breathing started to falter, as her family knew it might.

During the pregnancy doctors had told James and Jill Kilibarda that their baby had a lethal genetic problem that would probably end her life within hours of birth.

When Mike and Janel Newell learned the child she was carrying was fatally ill, they briefly considered abortion. They displayed an ultrasound photograph of the child, named Joseph, with that of their first son, William.

Jill and James Kilibarda’s daughter, Alaina, who is 20 weeks old, is not expected to live to reach preschool.

Most couples choose to have an abortion when they learn that the fetus has a fatal condition. But experts say about 20 to 40 percent of families given such diagnoses opt to carry the pregnancy to term, and an increasing number of them, like the Kilibardas, have turned to programs called perinatal hospice for help with the practical and spiritual questions that arise.

Having learned through the hospice to make the most of the time they had with their child, Alaina’s parents held her and told her things that people reveal to their children spontaneously and haphazardly over a lifetime. Into the October night, as her breathing halted and resumed, they explained how they met in Texas, though both were from Minnesota, and that they fell for each other at first sight. “And we told her that we’ll let her go,” Mrs. Kilibarda said, “and that it’s O.K. to go.”

Traditionally, doctors and nurses dealt with babies born with fatal anomalies by whisking them away from their mothers to die. But in the 1970s, a perinatal bereavement movement began offering parents another way to deal with the death of a

child at birth, by acknowledging the grief they feel and by creating family and religious rituals around a stillbirth or early death.

Drawing on that philosophy, at least 40 perinatal hospice programs have been started in the United States in the last decade, said Amy Kuebelbeck, an author in St. Paul whose son Gabriel died of a heart condition hours after his birth in 1999 and who has researched the subject.

A collection of services rather than a stand-alone facility, perinatal hospice programs are often associated with hospitals. Hospice nurses and social workers do things like arrange birthing lessons for women who do not want to be in classes with those carrying healthy babies. They give advice on how to tell other children in the family that the new baby will not be growing up with them. If the newborn lives beyond a few days, the hospice staff teaches the family how to take care of the baby at home.

“Families can choreograph their child’s very brief life with their family,” said Lizabeth Sumner, palliative care coordinator at Elizabeth Hospice in Escondido, Calif. “Sometimes they may have a matter of minutes, so they decide beforehand who can hold the baby, who will cut the umbilical cord, who will hold the baby when you know he is going to die.”

The Kilibardas’ daughter survived that first night and is now 20 weeks old. But her parents realize those anxious early hours may be replayed when she dies, probably before she reaches preschool.

At first, the Kilibardas did not even know what to ask about. But the hospice program guided them through the possibilities. “I was really reluctant to do it,” Mr. Kilibarda said. “It was like homework. But in the end, I felt that if anything were to happen, Jill and I had probably discussed it already.”

Giving Families Control

Some in the anti-abortion movement strongly support perinatal hospices. In Minnesota, a law was passed last year that called for women to be informed about perinatal hospices. But many hospice workers seem free of ideology. They say they hope to give families control over an event that could otherwise crush them. They also say they want to ease the isolation many families face in dealing with profound grief.

“I tell them this will shake up their relationships with their family and friends, it will shake what they believe about the world and their faith,” said the Rev. Peter Lund, a United Church of Christ minister and chaplain of the hospice program at Children’s Hospitals and Clinics of Minnesota in Minneapolis.

The questions the experience unearths are the most essential people face, he added. “How does your inner life fare, your relationship with God, as this progresses? How do you deal with everything that comes up? And how does that echo inside you?”

The Children’s Hospitals program here is called Deeya, Sanskrit for “a small light.” Since 2001, Deeya has served six to eight families a year, who mostly hear of it from genetic counselors and midwives. At the Birth Center of United Hospital in St. Paul, about 24 families a year choose the perinatal hospice approach.

The numbers are growing but small, said Jody Chrastek, Deeya’s director, because many health care workers do not know the program exists, and some doctors are hostile to families continuing the pregnancies.

“Some have been told they’re wasting their time for a baby that would be dead anyway,” Ms. Kuebelbeck said. “Some have been told they’re wasting the doctor’s time.”

Supported by a grant from a family that lost a child years ago, Deeya is free. But money for perinatal hospices is frequently

offered with the stipulation that families be steered away from abortion, should they reconsider their decision to proceed with the pregnancy, Ms. Chrastek said. Deeya and many other programs not affiliated with the anti-abortion movement decline such offers.

Families in hospice programs generally decide to let their children die without aggressive medical intervention, including feeding tubes, intravenous fluids and surgeries. They give medication to ease the child’s discomfort. Most children whose families participate in Deeya are stillborn or die within hours of birth, Ms. Chrastek said. About 30 percent of children go home with their families, where most eventually die.

For Mike and Janel Newell, the first hints of problems with their second child came after an ultrasound and blood test at 12 weeks. Their baby was found to have so many problems that no one seemed certain what would happen to him.

The ultrasound showed a large fluid-filled growth that extended from the back of the baby’s head to the base of his spine. Many families learn of problems this way, as routine ultrasounds uncover abnormalities like extra digits, club feet or cleft palates that sometimes signal far more severe problems, said Dr. Suzanne Toce, medical director of the Neonatal Intensive Care Unit at Gundersen Lutheran Health System in La Crosse, Wis., and director of a hospice program.

Chromosome tests revealed nothing unusual. But the baby’s cyst could not be removed, the Newells were told. It was so large that it was probably pushing against his trachea, and would limit his breathing. Facing such news, the Newells discussed terminating the pregnancy.

“Our knee-jerk reaction was to terminate the pregnancy because we couldn’t burden our family with such a sick baby,” Mr. Newell, 39, said. “It was a big relief for me when we asked our doctor if the baby had any chance and he said, ‘No.’ We didn’t have to make the choice anymore. It was completely out of our hands, and that was a better place to be.”

“So what do we do to make our time with him good,” said Mrs. Newell, 36, “because that would be our only time with him?”

Mrs. Newell’s midwife gave her the number of the Deeya program. People from the program came to their house, where Mrs. Newell works as a database architect and Mr. Newell is a stay-at-home father to their 2-year-old, William.

The most critical help Deeya provided, Mrs. Newell said, was a way to talk to others about the possible loss of their younger son, whom they named Joseph. “The program gave us permission to feel that this is something that is not out of the ordinary, that this is just life and people lose babies,” Mrs. Newell said. “And they showed us how to reach out to people who are helpful for us.”

A Deeya social worker, Martha Schermer, told Mrs. Newell that simple answers to questions from strangers about the baby’s due date were fine, but that co-workers and acquaintances needed more information, so they might provide support.

Facing the Bad News

The Newells had informed few of the pregnancy. Now, they had to tell family and friends that their child had life-threatening problems. In the first three weeks after they spread the news, no one called.

The isolation families experience when their baby is sick is common, Deeya staff members said. “Part of our role is to normalize things,” Mr. Lund said. “All your family may pull together with support. But the truth is, they will probably say

the stupidest things or stay away entirely.”

Mrs. Newell’s father called and urged her to consider an abortion. The Newells say they are uncomfortable with any political meaning that people might read into their decision. They are church-going Roman Catholics, and support abortion rights. Two other families who spoke about their experiences are also religious and supporters of abortion rights.

“I can’t tolerate people who think this is anything but a gut-wrenching choice,” Mr. Newell said. “By the same token, it was our choice to make, and if you had tried to restrict that in any way, it would have been very upsetting.”

Over time, Joseph’s cyst contracted and then began to grow again. He developed kidney problems. Blood periodically stopped flowing through his umbilical cord.

Joseph Milton Newell was born on Jan. 8, 11 weeks early. A 5-pound, 2-ounce baby with his father’s nose and the same cleft chin as his older brother, Joseph was a stillbirth.

The nurses placed him on his mother’s chest, as if he were a healthy baby, and his parents held him for the short time they had. With the encouragement of hospice staff and his wife, Mr. Newell took the one chance he would have to dress Joseph.

For the moment, the Kilibardas have settled into the rhythms of any family with a newborn. Mrs. Kilibarda, 32, recently went back to work as manager of volunteer services for Habitat for Humanity, and she and her husband, who owns a driving school, are splitting the care of their baby, Alaina.

She is their first child, small and light as a bird. They bathe her, read to her, feed her. “When things are like this, you’re trying to rationalize how she will live forever, that maybe she’s the one, the one who makes it, and she’ll be fine,” Mr. Kilibarda, 33, said. “And then she has a bad coughing episode and it comes all crashing in.”

Alaina has Trisomy 18, one of several genetic anomalies that occur when a child has three chromosomes, rather than the normal two, in the 23 pairs of chromosomes people have. The most common disorder is Trisomy 21, which is Down Syndrome. Alaina has three chromosomes on the 18th pair, a condition so severe that something is wrong with every cell in her body, Mr. Kilibarda said. Most babies with Trisomy 18 die shortly after birth, often because they stop breathing. Alaina is among the rare 10 percent who live past two months.

Caring for Alaina

The couple, both Roman Catholics who support abortion rights, struggled with continuing with the pregnancy. “We’re spiritual people, and we decided we can give ourselves up to God,” Mr. Kilibarda said of their decision. “Her life will be what it will be. If she lives two weeks, that’s her life. She’s our child.”

After deciding to continue the pregnancy, the couple contacted Deeya.

A nurse at the hospital where Alaina would be delivered, Raquel Beucler, arranged private classes with a childbirth educator. Ms. Beucler checked on the Kilibardas during the delivery and spent time with their families in the waiting area. Most critical, she put the Kilibardas in touch with a neonatologist who talked to them about the problems their child might have and the medical interventions available. The couple decided against them.

Through the hospice, Mr. Kilibarda met Mr. Lund, the chaplain, who was at the Kilibarda home one recent morning. The Kilibardas were not close to their priest, and they felt reassured that the chaplain had helped others in their situation.

“When she was born, part of me wanted her to just pass away, so I could deal with the grief,” Mr. Kilibarda said. “That’s just sick, but I couldn’t help it. And I had Peter say others had told him that, too, and I thought, thank goodness, I’m not crazy.”

Alaina’s birth and the family’s discussions with Mr. Lund have made them think a great deal about God’s role.

“When we were expecting Alaina, people said, ‘You’re in our prayers,’ ” Mrs. Kilibarda said. “But people were praying to make it a mistake, to make it all better for us.

“We weren’t asking, ‘Make it all better,’ ” she said. “God doesn’t come down and touch you to heal you. He sends people to be with you.”

Hospice workers encouraged the Kilibardas to make memories with Alaina. So while parents of healthy newborns might avoid crowds or other situations where their children might get sick, the Kilibardas have taken their daughter to their favorite coffee shop, the houses of friends and big family get-togethers. They want to know, they said, that she was once in places that mean something to them, like the cold forests of northern Minnesota where Mr. Kilibarda grew up and where they recently took her.

“I want to go through this with my eyes open,” he said, explaining why he turned to the hospice program. “I want to feel every ounce of pain, of happiness, because if I avoid it now, it will come back to bite me. I want to experience grace. What does that mean, because it’s such a vague term?

“I’m still trying to figure it out. I think I’ll experience it when this event comes complete,” he said, as his voice cracked, “when she passes.”