Childrens Hospice International 13th Annual ChiPACC Conference With technical assistance from Centers for Medicare amp Medicaid Services Hosted by Arnold amp Porter LLP April 16 2014 ID: 688666
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© Children’s Hospice International
Children’s Hospice International
13th Annual ChiPACC Conference
With technical assistance from
Centers for Medicare & Medicaid Services
Hosted by
Arnold & Porter, LLP
April 16, 2014Slide2
ChiPACC
Children’s Hospice International
WELCOME!
John Gould, Partner , Arnold & Porter LLPMahnu Davar, Sr. Associate, Arnold & Porter, LLP
Melissa Harris, Director,
Division of Benefits and Coverage, CMSAnn Armstrong-Dailey, CHISlide3
© Children’s Hospice International
Children’s Program for All-inclusive Coordinated Care
(ChiPACC)
Ann Armstrong-Dailey
Founding Director
Children’s Hospice InternationalSlide4
CHI PACC: Lessons Learned
“CHI’s ultimate goal is to so ingrain the hospice concept into pediatrics that it is considered an integral part of health care for children and adolescents rather than a separate specialty…”
1983, American Academy of Pediatrics
Ann Armstrong-Dailey
CHI
Pioneering Hospice Care for Children Slide5Slide6Slide7
CHI Pioneering Appropriate Care
Since 1983
CHI paving the way since 1983:
Definition/Standards/Glossary of TermsEducation and Training
World CongressesInternational ResourceTechnical Assistance
Advocacy Special Programs including
ChiPACCSlide8
DEMOGRAPHICS
USA 2005
POPULATION USA: 296 Million
Adult Deaths2.5 Million36% died under hospice care
Child Deaths53,526 children 0 -19 years
2.2% died under hospice care Children Diagnosed with Life-threatening Condition
1.2 MillionSlide9
Causes of Death
Children 1 – 19 Years
All Children 1 - 19
AccidentsAssaultMalignancy
SuicideCongenital malformations, deformationsChromosomal anomalies
Heart diseaseCerebrovascular diseases
All Children 1 – 19 w CCC
Malignancy 48%
Neuromuscular 23%
Cardiovascular 17%Slide10
Causes of Death
Infants
All Infants
Congenital Malformations 19.5%
Short gestation/LBW 16.5%
Sudden Infant DeathSyndrome 7.4%
Maternal complications 6.3%
Complication of placenta,
cord or membranes 4%
Accidents/unintentional 4%
Infants with CCC
Cardiovascular 32%
Congenital/genetic 26%
Respiratory 17%
Neuromuscular 14%Slide11
Need for additional support!
Children with chronic illness and complex health care needs are living longer and require creative approaches to delivery of care coordination and PP/HC (
HHS)
10.2 Million children (13.9% of US children ages 0-17) have special health care needs. This number is increasing slightly every year. (HHS
)CHI and ChiPACC are addressing this urgent need!Slide12
Current models of care do not adequately address needs of children with life-threatening conditions and their families
CHI Pioneering Appropriate Care Slide13
As Governments debate changes & reforms to their nation's healthcare programs
ChiPACC considered: Cost-effective solution,
Step in the right direction, Improved care for less cost!
ChiPACCSlide14
ChiPACC
A parent should never have to choose between hospice care and hope for a cure
.ChiPACC: Comprehensive compassionate coordinated care for children with life-threatening conditions and their families
From time of diagnosis With hope for cure Most appropriate setting
based on Family Choice – rather than funding streamSlide15
Reimbursement dollars, and support, follow the child and family throughout the continuum of care
Hospital
Home Care
Other
Hospice
Palliative Care
ChiPACC increases quality of care
AND
saves
money
!
ChiPACC
Funding FlowSlide16
ChiPACC
Successful “partnership”
Congress + CMS + CHI
A growing number of states beginning withFlorida! 1st in the NATION 2005!
Colorado! 1st
1915 (c) waiver 2006!
California waiver approved 2010!
New York waiver approved 2010!
North Dakota waiver approved 2010!
Additional states exploring
A growing number of countries exploring
ChiPACC
Partnering for SuccessSlide17
“I am approving this new Medicaid program in Florida because I believe we must do everything possible to lighten the heavy burden on families of children...
This is a step beyond traditional hospice rules, and the right thing to do for these most vulnerable children and their families”
The Honorable Mike Leavitt, Secretary
U.S. Dept. of Health & Human Services*
July, 2005
(*Minister of Health)
ChiPACC
Support from HHSSlide18
ChiPACC
In the Future
NEXT STEPS FOR ChiPACC:
Ongoing
Technical AssistanceEvaluation
Quality AssuranceResearch
LegislationSlide19
Progress
PROGRESS to date includes:
CMS expanded policy for ChiPACC
ChiPACC Bill introduced Concurrent Care Health Reform Provision
ChiPACC Bill (revised) re-introduced Slide20
ChiPACC BillSlide21
ChiPACC
Bill
ChiPACC Bill
Children’s Program of All-inclusive Coordinated Care
“Mattie & Melinda Bill”
Reintroduced January 27, 2009, U.S. Congress
Congressmen Jim Moran (D VA) & Bill Young (R FL)
-One sentence included in 2010 Healthcare Reform Bill-
Provision for concurrent care
Revised Bill re-introduced 2014 Slide22
Mattie & Melinda
Mattie Stephanic
Melinda LawrenceSlide23
ChiPACC
Overview of the Bill
ChiPACC “Mattie & Melinda” Bill
Ultimately serving 1.2 million children and families in U.S.A. (many more worldwide)
The ChiPACC Bill: Based on the collaborative model of care developed by CHI, the Children's Program of All-inclusive, Coordinated Care (ChiPACC) which provides each enrolled child an
individualized treatment plan that includes and manages services from providers across the health care spectrum.
ChiPACC:
Services will improve upon the often inconsistent care that is currently available to seriously ill children under Medicaid, doing so at a savings to taxpayers.
ChiPACC:
Goes
beyond
hospice and palliative care – while incorporating these critical components
ChiPACC:
Exceeds IOM 2002 Report recommendations
for children’s palliative care
ChiPACC:
Cost effective!
Slide24
ChiPACC
Its Many Benefits
ChiPACC benefits everyone
!In addition to saving taxpayers money,
ChiPACC benefits:Child & Family:
Increased quality of careHealthcare Providers:
Reimbursed for
ChiPACC
services
Healthcare Programs & Institutions:
Reimbursed for
ChiPACC
services
Society:
ChiPACC
is
preventive medicine
, decreasing dysfunction within the family and society, and allowing families to continue productive lives in their communitiesSlide25Slide26Slide27
On Being a Champion
A champion is a winner,
A hero…
Someone who never gives up
Even when the going gets rough,A Champion is a member of
A winning team…Someone who overcomes challenges
Even when it requires creative solutions.
A champion is an optimist,
A hopeful spirit…
Someone who plays the game,
Even when the game is called life…
Especially when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For life.
Mattie J.T. Stepanek, September 1999Slide28
CHI Information
Children’s Hospice International
For information:
Web: www.CHIonline.orgEmail:
Info@CHIonline.org Slide29Slide30
CMS Participation
2014 CHI TA Webinar
Melissa Harris, Director
Division of Benefits and Coverage
Disabled and Elderly Health Programs GroupSlide31
Florida’s Pediatric Palliative Care Program
Partners in Care: Together for KidsSlide32
Partners in Care: Together for Kids
PARTNERSSlide33
Partners in Care: Together for KidsSlide34
Map of Florida PIC:TFK ProvidersSlide35
Partners in Care: Together for KidsSlide36
Partners in Care: Together for Kids
Transition Phase
On January 1, 2014, the Partners in Care: Together for Kids Program transitioned from the 1915(b) waiver to the 1115 waiver.
On August 1, 2014, the Children’s Medical Services (CMS) Network will be a statewide plan for Florida Medicaid under Medicaid Managed Assistance (MMA) and the services of the Partners in Care: Together for Kids will continue to be provided to eligible children enrolled in the CMS Network.
The Program will continue to operate as it does today.Slide37
Partners in Care: Together for KidsSlide38
Partners in Care: Together for Kids
*Data for the CY 2013Slide39
Partners in Care: Together for Kids
Data Limitations
Only reflects Title XIX (Medicaid) clients
With
the National Correct Coding Initiative, implemented by the Centers for Medicare and Medicaid Services, there are outstanding claims for both the Support Counseling Services and Nursing ServicesSlide40
Partners in Care: Together for Kids
Program Contacts
Dusty Edwards, RN, BSN
Department of Health, Children’s Medical Services
Dusty.Edwards@flhealth.gov
Claire Anthony-Davis, RNFlorida Agency for Health Care Administration
Claire.Davis@ahca.myflorida.com
Slide41
Brian Greffe, M.D.
Professor of PediatricsUniversity of Colorado Denver SOM
Medical Director, The Butterfly ProgramApril 16th, 2014
COLORADO CHI PACC WAIVER UPDATESlide42
PRESENTATION OUTLINE
Timeline – Colorado 1915c CHI PACC WaiverOverview of the Waiver Past, Present, and FutureSlide43
COLORADO CHI
PACC
WAIVER TIMELINE
The Butterfly Program accepts its first patient
1999 (Jun)
2001
The Butterfly Program awarded demonstration project grant from CHI
Open Dialogue with the Dept of Health Care Policy and Financing (CO Medicaid) on working towards crafting a 1915c waiver based on CHI-
PACC
standards
2002
2003
Legislation required for drafting of a new Medicaid waiver; fiscal analysis indicates waiver could save Medicaid $20,000/year/child based on avoidance of unnecessary ER visits and hospitalizations
Senate Bill 206 signed into law by Governor Bill Owens
2004 (Jun)
2004 - 2006 (Mar)
Focus groups convened to determine waiver services; drafting of waiver
Waiver submitted to CMS
2006 (Mar)
2007 (Jan)
Waiver approved by CMS authorizing 200 patient slots
Final approval of rule (waiver) by
Medical
Services Board
2007 (Dec)
2008
Waiver implemen-tation; first patient-2/2008
Legislative Audit Committee requests State Auditor to run audit of waiver due to specific concerns of stakeholders
2010
2010 - 2013
Audit findings and recommendation reviewed; periodic meetings with stakeholders to work on recommended changes
Joint Budget Committee approves
reimbursment
rate increase for waiver services: passed in House and awaiting Senate approval
2014
2014 (Jul 1)
Implementation of recommended changes based on audit findingsSlide44
Waiver Name Change
Legislation passed indicated that waiver would be called “Pediatric Hospice Waiver” even though model of care in waiver follows CHI PACC principles
Waiver program named HOPEFuL shortly after implementation
Healing Opportunities, Palliative care, Encouragement For Living for youWaiver is currently named “Children with Life-Limiting Illness” (CLLI) waiver
Important to market program as one of “supportive” care avoiding use of terms “hospice” and “palliative”Slide45
Waiver Audit
2010 – Legislative Audit Committee request State Auditor to run an audit of the waiver given specific concerns of stakeholders
Findings of the audit includedWaiver services were poorly defined
An inadequate number of providers were participating in the programRates for services under the program were not in line with industry standards leading to low provider enrollment
Monthly meetings set up with stakeholders and Colorado Medicaid as a result of findings in order to resolve above issuesSlide46
Current Waiver Stats
Currently 197 children enrolled as of 4/7/14200 slots availableWaiver has serviced 256
children since implementationVery slow enrollment following implementationData for clients who had had claimsClient will not show up if provider did not bill for serviceNumber may also be lower than expected due to provider capacity issueSlide47
Home and Community Based Services (HCBS) CLLI Waiver Domain ChangesSlide48
Palliative Care
Scope narrowedPain and symptom managementAgency RN with EOL care experience +/- ELNEC trainingHome Health AgencyHospice
Care CoordinationGoal to help families in coordinating the complicated medical care often required by these childrenAgency RN, Home Health Agency, Hospice, Agency Medical MSWSlide49
Therapeutic Life-Limiting Illness Support
Grief /loss or anticipatory grief counseling/supportChange will allow providers to provide all encompassing support
To involve both patient and familyProvidersLCSWLicensed Professional CounselorLSWLicensed psychologist
Non-denominational chaplain/spiritual care counselorState plan services will be utilized prior to waiver services when available and appropriateSlide50
Expressive Therapy
Provision of creative art, music or play therapy which gives the children to creatively and kinesthetically express their medical situationProvider qualifications for music therapist updateProviders
Art/Play Therapies Providers who meet requirements for Therapeutic Life Limiting Illness Support with a minimum of one year experience in the provision of art or play therapy to children and adolecscentsDegree in music therapy (BA, MA, PhD) plus certificationSlide51
Complementary Therapies
Massage is the only complementary therapy waiver benefitLimited to 24 hours a yearNot included as waiver benefitsAcupuncture
AromatherapySlide52
Respite Care
3 types of respite careTo be provided in the home of an eligible client on a short term basis, not to exceed 30 days per annual certification based on date of entry into the program
ProvidersSkilled nursingHome health aidePersonal care Provider to be from qualified Medicaid home health, hospice, or personal care agencySlide53
Bereavement
Waiver benefit when hospice has not been electedCare coordinator discusses this option with family prior to the death of the childService is billed and paid as a lump sum to hospice agency prior to the death of the child if family opts for bereavement
Bereavement services available up to one year following the death of the childSlide54
Dietary and Nutritional Support
No longer going to be added as a waiver benefit effective 1/1/14Part of state plan benefitSlide55
Summary of
HCBS CLLI Waiver Benefits
Palliative CarePain and symptom managementCare Coordination
Therapeutic Life Limiting Illness SupportCounselingExpressive TherapiesArt, Music, Play therapiesComplementary Therapy
MassageRespite CareBereavementAll clients eligible for all other Medicaid state plan benefits including hospice and home healthSlide56
Cost Containment/Effectiveness
Preliminary cost data from fiscal 2012-2013 indicates the waiver is cost effectiveAverage per capita cost with state plan services - $61,808Institutional cost per capita -
$100, 773Waiver is up for renewal by CMS in 2015Slide57
CONTACTS
Brian Greffe, MD – Brian.Greffe@childrenscolorado.org
Candace Bailey – Candace.Bailey@state.co.usSlide58Slide59
California’s Pediatric Palliative Care
Waiver Program
Department of Health Care ServicesJill Abramson, MD,MPH
April 16, 2014Slide60
Overview
ServicesUpdatesIssuesNext Steps
OutlineSlide61
Overview: Partners for Children
1915(c) Home and Community-Based Waiver
Provides home-based, family-centered, coordinated palliative care to children with life-limiting conditions
Enabling legislation: The Nick Snow Children’s Hospice and Palliative Care Act of 2006 (Bill number AB 1745) Program summary: eligible children identified, enrolled by county nurse, referred to hospice or home health agency that provides waiver services
Pilot ran from April 2009 through March 2012The waiver has been renewed through March 2017
*Slide62
Finds/enrolls client
Connects client with agency
Reviews care planAuthorizes services
Provides local oversightCare Coordinator
At HHA or HAMeets with family to develop care plan and coordinate services
Coordinates waiver and community servicesMeets with family and CCSNL bimonthly
Supports client in multiple settings
CCSNLSlide63
Care coordination (RN + SW)
Massage/ art/ musicRespitePain/Symptom managementFamily Counseling/bereavement
PFC ServicesSlide64
Number, age demographics of enrolled
Since waiver inception: 206
Current enrollment: 86Average time in program: approx. 12 monthsMedical conditions
neoplasm, muscular dystrophy, cystic fibrosis, cerebral palsy, metabolic disorderCounty of residence includeLos Angeles, Orange, Monterey, Sonoma, Santa Cruz +
Race/ethnicity70% Latino/Hispanic, then Caucasian, Asian, BlackAge -1 year through 20 years
EnrollmentSlide65
UCLA Center for Health PolicyFinal evaluation in progress
Satisfaction surveys – families, agencies, CCSNLs – very positive feedbackCost evaluation – preliminary findings suggest significant savings
PFC evaluationSlide66
PFC Family Satisfaction: 9.0 to 9.8 For Most ServicesSlide67
PFC Family Satisfaction: 9.0 to 9.8 For Most ServicesSlide68
PFC evaluation – $2848
pmpm cost savings
Note: Change in ER costs was low and was omitted
Source: UCLA analysis of PFC enrollees’ claims dataSlide69
Claims – resolving
Managed Care and OHC - resolvingLong referral process – partnering with referring inpatient pediatric palliative care team to shortenHome health and hospice agency buy in
Current reimbursement not sustainable for agencies – restructure rates?UpdatesSlide70
Modify reimbursement Additional streamlining
Consider expanding to additional countiesSurvey on what other services may be neededSharing the PFC experience at Grand Rounds and other meetings to increase referrals
Next StepsSlide71
Jill Abramson, MD, MPH
Partners for Children state lead, DHCS
Jill.Abramson@dhcs.ca.govPartners for Children: http://www.dhcs.ca.gov/services/ppc/Pages/default.aspx
ccsppc@dhcs.ca.gov
Contacts and ResourcesSlide72Slide73
To Children’s Hospice and Pediatric Care Coalition for continuing supportTo Robert Dimand MD, Chief Medical Officer of SCD and to other DHCS staff and County CCS staff who have helped with this waiver program,
To Providence Trinity Hospice, Coastal Kids Home Care and Hospice By the Bay who have provided outstanding services despite many reimbursement issues.Slide74
Children’s Hospice International
Redesign Medicaid in New York State
Annual Conference/Webinar
April 16, 2014Slide75
State Update: New York
Children’s Hospice International
Annual Conference/WebinarApril
16, 2014Slide76
State Update: New York
Presented by:
Liz Morales, Care At Home I/II ProgramNew York State Department of HealthOffice of Health Insurance Programs Division of Long Term Care
Bureau of Home and Community Based WaiversSlide77
Outline
Care at Home (CAH) I/II Waiver
CAH I/II Waiver Services Slide78
New York’s Approach
CAH
I/II is a Medicaid waiver for children who are determined physically disabled according to Social Security Administration criteria Slide79
CAH I/II Program Background
The CAH I/II waiver, which has been in existence since 1985, includes five
pediatric palliative care services. The waiver renewal in 2009 included many changes, including the addition of three other waiver services.The addition of Medicaid eligible childrenLevels of Care
CAH I: Skilled Nursing FacilityCAH II
: Hospital Slide80
Who is eligible for
Care
at Home?Children who have a Skilled Nursing Facility or Hospital level of careUnder 18 years of age
Can be cared for at home safely and at no greater cost than in the appropriate facilityChild must not be marriedSlide81
Who is eligible for
Care
at Home?Children who are Medicaid eligible when parents’ income and/or resources are counted*
- OR -Children who are Medicaid ineligible when parents’ income and/or resources are counted but eligible when parents’ income and resources are not counted
*Effective April 15, 2009 Slide82
CAH I/II
Waiver Services
Case ManagementRespite
Home and Vehicle ModificationsFamily Palliative Care Education Pain and Symptom Management
Bereavement Massage Therapy
Expressive Therapy
Art
Music
PlaySlide83
CAH I/II
Palliative Care
Waiver ProvidersServices provided by a: Hospice; or
Certified Home Health Agency (CHHA)Slide84
Palliative Care Children’s Advisory
Group
Comprised of hospices, CHHAs and providers of long term careContinues to be a source of information and guidance
Served as a resource to assist NYS DOH to:Define service descriptions
Define provider credentialsDevelop provider/program requirementsDefine continuing education credentials
Provide outreach to potential providersSlide85
Moving
Forward
Continue to outreach to potential providers. Continue to outreach to potential families whose children may be eligible. Develop educational and outreach materials for families with disabled children.Slide86
Future Endeavors
The renewal application for CAH
I/II was submitted to CMS in the Fall 2013. Care At Home waiver staff are in discussion with CMS to finalize and obtain approval
Contains no major changes; new Pediatric Assessment tool will be employed (UAS-NY), upon approval from CMSSlide87
Contacts
CAH I/II – DOH State Contact:
(518) 474-5271
Liz MoralesCare At Home Program I/II
EAM04@health.state.ny.usCarol Hodecker
CXH09@health.state.ny.us
Susan Appleby
SXA10@health.state.ny.us
Hospice and Palliative Care Children’s Advisory Group Contact
:
(518) 446-1483
Kathy A. McMahon
President and CEO of HPCANY
kmcmahon@hpcanys.orgSlide88
Federal Legislative Update on Coordinated Care for Children with Life-Limiting Conditions
David Pore and Sara Garofalo
Arnold & Porter, LLPApril 16, 2014Slide89
CMS Rule on HCBS Waivers
CMS issued a final rule in January 2014, which makes changes to Home and Community Based Services (
HCBS). Applicable to waivers 1915(c) :Allows Secretary to waive certain statutory requirements to let states extend HCBS to certain subgroups of Medicaid participants who qualify for institutional levels of care
Allows states to combine three eligibility groupsImplements requirements for person-centered plansDefines HCB setting requirements Slide90
ChiPACC Legislation
ChiPACC legislation has been introduced in previous sessions of Congress by Rep. Jim Moran (D-VA).
Re-introduction anticipated in spring of 2014.Bill would increase state flexibility and make it easier for states to implement a ChiPACC program as a Medicaid state plan option.
Currently, states must get approval through a complicated and timely waiver process through CMS.Five states including, California, Colorado, New York, Florida, and North Dakota have programs in operation.Additional states are in various levels of developing programs.Slide91
ChiPACC Legislation
Bill General Overview:Provides enrolled children with individualized treatment plan that does not limit scope, amount, or duration of care for eligible services.
Eligible services include acute, long term care, palliative care, respite, curative treatment and counseling support services to individual and family members.Coordinated care improves access to community-based care to avoid costly hospitalizations.Service delivery system would be cost neutral to the Medicaid program.Slide92
Legislative Outlook in 2014
Working with key members of House Energy and Commerce Committee, Congressional caucuses on potential avenues for including
ChiPACC language in upcoming legislative vehicles:SCHIP reauthorization; Medicaid overhaul legislation; complex children’s hospital legislation (Reps. Barton/Castor).Positioning
ChiPACC program as a cost-saving option which can be used as an offset in other must-pass legislation.Educating members and staff on states’ waivers savings.Developing new ChiPACC
champions in Congress and outreach to natural allies engaged in pediatric healthcare issues.Working to identify and utilize ChiPACC’s existing partnerships to leverage support for ChiPACC program with key members of Congress.Slide93
© Children’s Hospice International
Children’s Hospice International
13th
Annual
ChiPACC
Conference
With technical assistance from
Centers
for Medicare & Medicaid Services
DISCUSSION
MELISSA HARRIS FacilitatorSlide94
ChiPACC
Contacts
For additional Information please contact:
CMS
:
Melissa.Harris@cms.hhs.gov
CHI
:
armstrongdailey@chionline.org
John.Gould@APORTER.COM Mahnu.Davar@APORTER.COM
David.Pore@APORTER.COM