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Removing Barriers to Pediatric Palliative Care: The Case for Concurrent Care

Presenters. Lori Butterworth and Devon DabbsFounders and Executive Directorswww.Childrenshospice.org. The boy who flunked hospice

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Removing Barriers to Pediatric Palliative Care: The Case for Concurrent Care

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    1. Removing Barriers to Pediatric Palliative Care: The Case for Concurrent Care

    2. Presenters Lori Butterworth and Devon Dabbs Founders and Executive Directors www.Childrenshospice.org

    3. The boy who flunked hospice…twice! “I don’t see why I have to lose all of these services just because I want to live.”

    4. Children Hospice and Palliative Care Coalition – Fighting a Good Fight Children’s Hospice and Palliative Care Coalition is spearheading the growing movement to ensure that children with life-threatening conditions can live well and die gently. Towards this end, Children's Hospice and Palliative Care Coalition successfully enacted the Nick Snow Children's Hospice & Palliative Care Act of 2006, which will assure that children can have access to compassionate family-centered care without having to give up treatment intended to save their lives. The bill was signed into law on September 19, 2006.

    5. Imperatives for Change American Academy of Pediatrics Recommendations for Pediatric Palliative Care (2000) Children’s International Project on Palliative/Hospice Services. White paper: “A Call for Change” Institute of Medicine Report: “When Children Die” (2002) California’s AB1745: “The Nick Snow Children’s Hospice And Palliative Care Act

    6. Comprehensive Pediatric Palliative Care Benefit Existing state plan services February 14, 2007 - California State Department of Health Care Services issued pediatric palliative care numbered letter to all counties in California. Hospice eligibility Waiver removes access barriers. Nick Snow Act signed into law on September 19, 2007. Requires waiver submission by January 1, 2008

    7. The Nick Snow Children’s Hospice and Palliative Care Act

    8. Additional Services Offered Under California’s Waiver In addition to traditional hospice services and services already available under the state plan, waiver offers: Care coordination Respite Anticipatory Grief and Bereavement support Expressive Therapies Alternative Therapies

    9. State Initiatives Washington State EPSDT Massachusetts Healthcare Reform Act CHIPACC Waivers Florida Colorado Contact Children’s Hospice and Palliative Care Coalition - Tender Mercies Report (gives overview of various state programs and initiatives)

    10. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 Section 14132.74 is added to the Welfare and Institutions Code, to read: 14132.74. (a) The department, in consultation with interested stakeholders, shall develop, as a pilot project, a pediatric palliative care benefit to evaluate whether, and to what extent, such a benefit should be offered under the Medi-Cal program. The pilot project shall be implemented only to the extent that federal financial participation is available.

    11. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 (b) Beneficiaries eligible to receive the pediatric palliative care benefit shall be 21 years of age or younger. The department may further limit the population served by the pilot project to a size deemed sufficient to make the evaluation required pursuant to subdivision (a). (c) Services covered under the pediatric palliative care benefit shall be designed to meet the unique needs of children, and shall include those types of services that are available through the Medi-Cal hospice benefit. The benefit shall also include the following services, regardless of whether those services are covered under the Medi-Cal hospice benefit:

    12. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 (1) Hospice services that are provided at the same time that curative treatment is available, to the extent that the services are not duplicative. (2) Hospice services provided to individuals whose conditions may result in death, regardless of the estimated length of the individual’s remaining period of life. (3) Any other services that the department determines to be appropriate

    13. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 (d) The department in consultation with interested stakeholders shall determine the medical conditions and prognoses that render a beneficiary eligible for the benefit. (e) Providers authorized to provide services under the pilot program shall include licensed hospice agencies and home health agencies licensed to provide hospice care, subject to criteria developed by the department for provider participation

    14. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 (f) (1) The department shall submit any necessary application to the federal Centers for Medicare and Medicaid Services for a waiver to implement the pilot project described in this section. The department shall determine the form of waiver most appropriate to achieve the purposes of this section. The waiver request shall be included in any waiver application submitted within on year after the effective date of this section, or shall be submitted as an independent application within that time period. After federal approval is secured, the department shall implement the waiver within six months of the date of approval.

    15. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 (2) The waiver shall be designed to cover a period time necessary to evaluate the medical necessity for, and cost-effectiveness of, a pediatric palliative care benefit. The results of the pilot project shall be made available to the Legislature and appropriate policy and fiscal committees to determine the effectiveness of the benefit.

    16. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 (g) Notwithstanding Chapter 3.5 (commencing with section 11340) of Part 1 of Division 3 of Title 2 of the Government Code, the department may implement the provisions of this section by means of provider bulletins or similar instructions, without the adoption of regulations. The department shall notify the fiscal and appropriate policy committees of the Legislature of its intent to issue a provider bulletin or other similar instructions at least five days prior to issuance

    17. CALIFORNIA ASSEMBLY BILL 1745 – THE NICK SNOW CHILDREN’S HOSPICE AND PALLIATIVE CARE ACT OF 2006 (h) (1) Nothing in this section shall result in the elimination or reduction of any covered benefits or services under the Medi-Cal program or the California Children’s Services Program. (2) This section shall not affect an individual’s eligibility to receive, concurrently with the benefit provided for in this section, any services, including home health services, for which the individual would have been eligible in the absence of this section.

    18. Pediatric Palliative Care Numbered Letter Series To provide policy guidelines for the definition and authorization of palliative care services under the state plan service package. States intention to provide concurrent palliative and curative care.

    19. Children Hospice and Palliative Care Coalition – Fighting a Good Fight The Partnership for Parents (Padres Compadres) www.partnershipforparents.org The PartnershipforParents.Org is a national support network for parents of children with serious illnesses who find themselves pacing the floor in the middle of the night worrying and wondering. PartnershipforParents.Org was created by Children's Hospice and Palliative Care Coalition working closely with parents of seriously ill children and bereaved parents. This resource for parents is designed to be a haven where parents whose children are enduring treatment for serious illnesses, as well as parents grieving the loss of a child, can feel the solace of kindred spirits while finding the information and making the connections they need to cope and navigate this difficult journey

    20. SUMMARY Only a handful of hospice programs nationwide are offering pediatric hospice & palliative care. Regulatory, compliance & reimbursement barriers Developing a pediatric hospice program requires an extraordinary fiduciary commitment from the governance, senior management, staff, education coordinator, finance department, grief and bereavement counselors, volunteers and medical directors. Nurture our commitment of providing children with the best care including those for whom cure is not yet possible.

    21. Children Hospice and Palliative Care Coalition – Fighting a Good Fight Lori Butterworth, Co-Executive Director Devon Dabbs, Co-Executive Director 65 Nielson Street #108 Watsonville, CA 95076 831.763.3070 www.ChildrensHospice.Org

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