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© Children’s Hospice International
Children’s Hospice International13th Annual ChiPACC Conference
With technical assistance from
Centers for Medicare & Medicaid Services Hosted by
Arnold & Porter, LLPApril 16, 2014
ChiPACCChildren’s Hospice International
WELCOME!
John Gould, Partner , Arnold & Porter LLPMahnu Davar, Sr. Associate, Arnold & Porter, LLP
Melissa Harris, Director,
Division of Benefits and Coverage, CMS
Ann Armstrong-Dailey, CHI
© Children’s Hospice International
Children’s Program for All-inclusive Coordinated Care
(ChiPACC)Ann Armstrong-Dailey
Founding DirectorChildren’s Hospice International
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
CHIPioneering Hospice Care for Children
CHI Pioneering Appropriate
Care Since 1983
CHI paving the way since 1983:• Definition/Standards/Glossary of Terms• Education and Training• World Congresses• International Resource• Technical Assistance• Advocacy • Special Programs including ChiPACC
DEMOGRAPHICSUSA 2005
POPULATION USA: 296 Million
Adult Deaths• 2.5 Million• 36% died under hospice care
Child Deaths• 53,526 children 0 -19 years• 2.2% died under hospice care
Children Diagnosed with Life-threatening Condition• 1.2 Million
Causes of Death Children 1 – 19 Years
All Children 1 - 19
• Accidents• Assault• Malignancy• Suicide• Congenital malformations,
deformations• Chromosomal anomalies• Heart disease• Cerebrovascular diseases
All Children 1 – 19 w CCC
• Malignancy
48%• Neuromuscular
23%• Cardiovascular
17%
Causes of DeathInfants
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%
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!
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!
ChiPACC
Current models of care do not adequately address needs of children with life-threatening conditions and their families
CHI Pioneering Appropriate Care
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 diagnosisWith hope for cure
Most appropriate setting based on Family Choice – rather than funding stream
Reimbursement dollars, and support, follow the child and family throughout the continuum of care
Hospital
Home Care
Other
HospicePalliative Care
ChiPACC increases quality of care AND saves money!
ChiPACCFunding Flow
ChiPACC Successful “partnership”
Congress + CMS + CHI A growing number of states beginning with
Florida! 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 exploringA growing number of countries exploring
ChiPACCPartnering for Success
“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, SecretaryU.S. Dept. of Health & Human Services*
July, 2005(*Minister of Health)
ChiPACCSupport from HHS
ChiPACCIn the Future
NEXT STEPS FOR ChiPACC:• Ongoing Technical Assistance• Evaluation• Quality Assurance• Research• Legislation
Progress
PROGRESS to date includes:
• CMS expanded policy for ChiPACC • ChiPACC Bill introduced • Concurrent Care Health Reform Provision• ChiPACC Bill (revised) re-introduced
ChiPACC Bill
ChiPACC Bill
ChiPACC BillChildren’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 careRevised Bill re-introduced 2014
Mattie & Melinda
Mattie Stephanic Melinda Lawrence
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!
ChiPACC Its Many Benefits
ChiPACC benefits everyone!In addition to saving taxpayers money, ChiPACC benefits:
• Child & Family: Increased quality of care• Healthcare 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 communities
On Being a Champion
A champion is a winner,A hero…
Someone who never gives upEven when the going gets rough,
A Champion is a member ofA winning team…
Someone who overcomes challengesEven 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 1999
CHI Information
Children’s Hospice International
For information:
Web: www.CHIonline.org
Email: [email protected]
CMS Participation2014 CHI TA Webinar
Melissa Harris, DirectorDivision of Benefits and Coverage
Disabled and Elderly Health Programs Group
Florida’s Pediatric Palliative Care Program
Partners in Care: Together for Kids
Partners in Care: Together for Kids
Department of Health, Children’s Medical Services
(CMS)
Florida Hospices
Agency for Health Care
Administration
PARTNERS
Partners in Care: Together for Kids
Support CounselingPain and Symptom Management
Specialized NursingSERVICES
Specialized Personal Care
Activity TherapiesRespite
Map of Florida PIC:TFK Providers
Partners in Care: Together for Kids
DEVELOPMENT PHASE
2001-2003
• Implementation Guidelines• Billing codes• Partnerships
LEGISLATIVE PHASE2004-2005
• Title XXI State Plan Amendment• 1915(b)(3) CHI PACC Waiver
IMPLEMENTATION PHASE
2005-2007• 7 sites
EXPANSION PHASE2009-Present
• 14 sites, covering 54 of the 67 Florida Counties
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.
Partners in Care: Together for Kids
Jan-06 Jan-07 Jan-08 Jan-09 Jan-10 Jan-11 Jan-12 Jan-13 Jan-140
100
200
300
400
500
600
700
78146
300263
386
560503
543593
Active PIC:TFK Enrollees
Partners in Care: Together for Kids
Total clients receiving PIC:TFK
Services:723
Total amount of claims paid:$681,335.33
Average cost per client:
$942.37*Data for the CY 2013
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 Services
Partners in Care: Together for Kids
Program ContactsDusty Edwards, RN, BSN
Department of Health, Children’s Medical Services
Claire Anthony-Davis, RN
Florida Agency for Health Care Administration
Brian Greffe, M.D.Professor of Pediatrics
University of Colorado Denver SOM
Medical Director, The Butterfly Program
April 16th, 2014
COLORADO CHI PACC WAIVER UPDATE
PRESENTATION OUTLINE
Timeline – Colorado 1915c CHI PACC WaiverOverview of the Waiver Past, Present, and
Future
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 standards2002
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 Board2007 (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
stakeholders2010
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 findings
Waiver Name ChangeLegislation 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 implementationHealing Opportunities, Palliative care,
Encouragement For Living for youWaiver is currently named “Children with Life-
Limiting Illness” (CLLI) waiverImportant to market program as one of “supportive”
care avoiding use of terms “hospice” and “palliative”
Waiver Audit2010 – 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 definedAn 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 issues
Current Waiver StatsCurrently 197 children enrolled as of 4/7/14
200 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 issue
Home and Community Based Services (HCBS) CLLI Waiver Domain Changes
Palliative CareScope narrowedPain and symptom management
Agency RN with EOL care experience +/- ELNEC training
Home Health AgencyHospice
Care CoordinationGoal to help families in coordinating the
complicated medical care often required by these children
Agency RN, Home Health Agency, Hospice, Agency Medical MSW
Therapeutic Life-Limiting Illness SupportGrief /loss or anticipatory grief counseling/supportChange will allow providers to provide all
encompassing supportTo involve both patient and familyProviders
LCSWLicensed Professional CounselorLSWLicensed psychologistNon-denominational chaplain/spiritual care counselor
State plan services will be utilized prior to waiver services when available and appropriate
Expressive TherapyProvision of creative art, music or play
therapy which gives the children to creatively and kinesthetically express their medical situation
Provider qualifications for music therapist update
ProvidersArt/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 adolecscents
Degree in music therapy (BA, MA, PhD) plus certification
Complementary TherapiesMassage is the only complementary therapy
waiver benefitLimited to 24 hours a year
Not included as waiver benefitsAcupunctureAromatherapy
Respite Care3 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 agency
BereavementWaiver 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 child
Dietary and Nutritional SupportNo longer going to be added as a waiver
benefit effective 1/1/14Part of state plan benefit
Summary of HCBS CLLI Waiver BenefitsPalliative Care
Pain and symptom managementCare Coordination
Therapeutic Life Limiting Illness SupportCounseling
Expressive TherapiesArt, Music, Play therapies
Complementary TherapyMassage
Respite CareBereavementAll clients eligible for all other Medicaid state plan
benefits including hospice and home health
Cost Containment/EffectivenessPreliminary 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, 773
Waiver is up for renewal by CMS in 2015
California’s Pediatric Palliative Care Waiver Program
Department of Health Care Services
Jill Abramson, MD,MPHApril 16, 2014
Overview Services Updates Issues Next Steps
Outline
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 2012 The waiver has been renewed through March 2017
*
• Finds/enrolls client• Connects client with
agency• Reviews care plan• Authorizes services• Provides local oversight
Care Coordinator• At HHA or HA• Meets with family to
develop care plan and coordinate services
• Coordinates waiver and community services
• Meets with family and CCSNL bimonthly
• Supports client in multiple settings
CCSNL
Care coordination (RN + SW) Massage/ art/ music Respite Pain/Symptom management Family Counseling/bereavement
PFC Services
Number, age demographics of enrolled Since waiver inception: 206 Current enrollment: 86 Average time in program: approx. 12 months
Medical conditions neoplasm, muscular dystrophy, cystic fibrosis, cerebral
palsy, metabolic disorder County of residence include
Los Angeles, Orange, Monterey, Sonoma, Santa Cruz + Race/ethnicity
70% Latino/Hispanic, then Caucasian, Asian, Black Age -1 year through 20 years
Enrollment
UCLA Center for Health Policy Final evaluation in progress Satisfaction surveys – families, agencies,
CCSNLs – very positive feedback Cost evaluation – preliminary findings
suggest significant savings
PFC evaluation
PFC Family Satisfaction: 9.0 to 9.8 For Most Services
PFC Family Satisfaction: 9.0 to 9.8 For Most Services
9.89.7
9.8
9.39.1
9.8 9.89.6
99.2
First follow-up Second follow-up
PFC evaluation – $2848 pmpm cost savings
Note: Change in ER costs was low and was omittedSource: UCLA analysis of PFC enrollees’ claims data
Claims – resolving Managed Care and OHC - resolving Long referral process – partnering with
referring inpatient pediatric palliative care team to shorten
Home health and hospice agency buy in Current reimbursement not sustainable for
agencies – restructure rates?
Updates
Modify reimbursement Additional streamlining Consider expanding to additional counties Survey on what other services may be
needed Sharing the PFC experience at Grand Rounds
and other meetings to increase referrals
Next Steps
Jill Abramson, MD, MPHPartners for Children state lead, [email protected]
Partners for Children: http://www.dhcs.ca.gov/services/ppc/Pages/default.aspx [email protected]
Contacts and Resources
To Children’s Hospice and Pediatric Care Coalition for continuing support
To 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.
Children’s Hospice International
Redesign Medicaid in New York State
Annual Conference/WebinarApril 16, 2014
State Update: New York
Children’s Hospice International
Annual Conference/Webinar
April 16, 2014
State Update: New York
Presented by:
Liz Morales,
Care At Home I/II Program
New York State Department of Health
Office of Health Insurance Programs
Division of Long Term Care
Bureau of Home and Community Based Waivers
Outline
Care at Home (CAH) I/II Waiver
CAH I/II Waiver Services
New York’s Approach
CAH I/II is a Medicaid waiver for children who are determined physically disabled according to Social Security Administration criteria
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 children
Levels of Care
CAH I: Skilled Nursing Facility
CAH II: Hospital
Who is eligible for Care at Home?
Children who have a Skilled Nursing Facility or Hospital level of care
Under 18 years of age
Can be cared for at home safely and at no greater cost than in the appropriate facility
Child must not be married
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
CAH I/II Waiver Services
Case Management Respite Home and Vehicle Modifications Family Palliative Care Education Pain and Symptom Management Bereavement Massage Therapy Expressive Therapy
Art Music Play
CAH I/II Palliative Care Waiver Providers
Services provided by a: Hospice; or Certified Home Health Agency (CHHA)
Palliative Care Children’s Advisory Group
Comprised of hospices, CHHAs and providers of long term care
Continues to be a source of information and guidance
Served as a resource to assist NYS DOH to:
Define service descriptions
Define provider credentials
Develop provider/program requirements
Define continuing education credentials
Provide outreach to potential providers
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.
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 CMS
Contacts
CAH I/II – DOH State Contact:
(518) 474-5271
Liz Morales
Care At Home Program I/II
Carol Hodecker
Susan Appleby
Hospice and Palliative Care Children’s Advisory Group Contact:
(518) 446-1483
Kathy A. McMahon
President and CEO of HPCANY
Federal Legislative Update on Coordinated Care for Children with
Life-Limiting Conditions
David Pore and Sara Garofalo
Arnold & Porter, LLP
April 16, 2014
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 groups– Implements requirements for person-centered plans– Defines HCB setting requirements
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.
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.
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.
© Children’s Hospice International
Children’s Hospice International13th Annual ChiPACC Conference
With technical assistance from
Centers for Medicare & Medicaid Services
DISCUSSIONMELISSA HARRIS Facilitator
ChiPACCContacts
For additional Information please contact:
CMS:
CHI:[email protected]@APORTER.COM
[email protected]@APORTER.COM
