Children’s Hospice International
13th Annual ChiPACC Conference
With technical assistance from
Centers for Medicare & Medicaid Services
Hosted by
Arnold & Porter, LLP
April 16, 2014
© Children’s Hospice International
ChiPACC
Children’s Hospice International
WELCOME!
John Gould, Partner , Arnold & Porter LLP
Mahnu Davar, Sr. Associate, Arnold & Porter, LLP
Melissa Harris, Director,
Division of Benefits and Coverage, CMS
Ann Armstrong-Dailey, CHI
Children’s Program for All-inclusive
Coordinated Care
(ChiPACC)
Ann Armstrong-Dailey
Founding Director
Children’s Hospice International
© Children’s Hospice International
CHI
Pioneering Hospice Care for Children
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 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
DEMOGRAPHICS
USA 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
All Children 1 – 19 w CCC
•
•
•
•
•
• Malignancy
• Neuromuscular
• Cardiovascular
Accidents
Assault
Malignancy
Suicide
Congenital malformations,
deformations
• Chromosomal anomalies
• Heart disease
• Cerebrovascular diseases
48%
23%
17%
Causes of Death
Infants
All Infants
Infants with CCC
• Congenital Malformations 19.5%
• Cardiovascular
32%
• Short gestation/LBW
• Congenital/genetic
26%
• Respiratory
17%
• Neuromuscular
14%
16.5%
• Sudden Infant Death
Syndrome
7.4%
• Maternal complications
6.3%
• Complication of placenta,
cord or membranes
4%
• Accidents/unintentional
4%
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!
ChiPACC
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!
CHI Pioneering Appropriate Care
Current models of care do not adequately
address needs of children with lifethreatening conditions and their families
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 stream
ChiPACC
Funding Flow
Reimbursement dollars, and support, follow the child
and family throughout the continuum of care
Hospital
Hospice
Palliative Care
Home Care
Other
ChiPACC increases quality of care AND saves money!
ChiPACC
Partnering for Success
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 exploring
A growing number of countries exploring
ChiPACC
Support from HHS
“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
In 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 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 BillProvision for concurrent care
Revised 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 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 1999
CHI Information
Children’s Hospice International
For information:
Web: www.CHIonline.org
Email: Info@CHIonline.org
CMS Participation
2014 CHI TA Webinar
Melissa Harris, Director
Division 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
PARTNERS
Department of
Health, Children’s
Medical Services
(CMS)
Agency for
Health Care
Administration
Florida
Hospices
Partners in Care:
Together for Kids
Pain and
Symptom
Management
SERVICES
Support
Counseling
Specialized
Nursing
Respite
Specialized
Personal
Care
Activity
Therapies
Map of
Florida
PIC:TFK
Providers
Partners in Care:
Together for Kids
DEVELOPMENT
PHASE
2001-2003
• Implementation Guidelines
• Billing codes
• Partnerships
LEGISLATIVE
PHASE
2004-2005
• Title XXI State Plan Amendment
• 1915(b)(3) CHI PACC Waiver
IMPLEMENTATION
PHASE
• 7 sites
2005-2007
EXPANSION PHASE
2009-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
700
560
600
503
500
386
400
300
300
200
100
543
593
263
146
78
0
Jan-06
Jan-07
Jan-08
Jan-09 Jan-10 Jan-11
Active PIC:TFK Enrollees
Jan-12
Jan-13
Jan-14
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 Contacts
Dusty Edwards, RN, BSN
Department of Health, Children’s Medical Services
Dusty.Edwards@flhealth.gov
Claire Anthony-Davis, RN
Florida Agency for Health Care Administration
Claire.Davis@ahca.myflorida.com
COLORADO CHI PACC WAIVER UPDATE
Brian Greffe, M.D.
Professor of Pediatrics
University of Colorado Denver SOM
Medical Director, The Butterfly
Program
April 16th, 2014
PRESENTATION OUTLINE
 Timeline – Colorado 1915c CHI PACC Waiver
 Overview of the Waiver Past, Present, and Future
COLORADO CHI PACC WAIVER
TIMELINE
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
Legislative Audit
Committee requests
State Auditor to run
Waiver submitted to
audit of waiver due to
CMS
specific concerns of
2006 (Mar)
stakeholders
2010
Final approval of rule
(waiver) by Medical
Senate Bill 206 signed into
Services Board
law by Governor Bill Owens
2007 (Dec)
2004 (Jun)
The Butterfly
Program accepts its
first patient
1999 (Jun)
2001
The Butterfly Program
awarded demonstration
project grant from CHI
2004 - 2006 (Mar)
Focus groups convened to
determine waiver services;
drafting of waiver
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
2008 Waiver
implementation; first
patient-2/2008
2007 (Jan) Waiver
approved by CMS
authorizing 200
patient slots
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
2010 - 2013
Audit findings and
recommendation reviewed;
periodic meetings with
stakeholders to work on
recommended changes
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 you
 Waiver 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”
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 included
 Waiver services were poorly defined
 An inadequate number of providers were participating in the
program
 Rates 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 Stats
 Currently 197 children enrolled as of 4/7/14
 200 slots available
 Waiver has serviced 256 children since
implementation
 Very slow enrollment following implementation
 Data for clients who had had claims
 Client will not show up if provider did not bill for service
 Number may also be lower than expected due to
provider capacity issue
Home and Community Based
Services (HCBS) CLLI Waiver
Domain Changes
Palliative Care
 Scope narrowed
 Pain and symptom management
 Agency RN with EOL care experience +/- ELNEC
training
 Home Health Agency
 Hospice
 Care Coordination
 Goal 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
Support
 Grief /loss or anticipatory grief counseling/support
 Change will allow providers to provide all encompassing support
 To involve both patient and family
 Providers
 LCSW
 Licensed Professional Counselor
 LSW
 Licensed psychologist
 Non-denominational chaplain/spiritual care counselor
 State plan services will be utilized prior to waiver services when
available and appropriate
Expressive Therapy
 Provision 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
 Providers
 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 adolecscents
 Degree in music therapy (BA, MA, PhD) plus
certification
Complementary Therapies
 Massage is the only complementary therapy waiver
benefit
 Limited to 24 hours a year
 Not included as waiver benefits
 Acupuncture
 Aromatherapy
Respite Care
 3 types of respite care
 To 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
 Providers
 Skilled nursing
 Home health aide
 Personal care
 Provider to be from qualified Medicaid home health,
hospice, or personal care agency
Bereavement
 Waiver benefit when hospice has not been elected
 Care coordinator discusses this option with family
prior to the death of the child
 Service 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 Support
 No longer going to be added as a waiver benefit
effective 1/1/14
 Part of state plan benefit
Summary of HCBS CLLI Waiver
Benefits
 Palliative Care
 Pain and symptom management
 Care Coordination
 Therapeutic Life Limiting Illness Support
 Counseling
 Expressive Therapies
 Art, Music, Play therapies
 Complementary Therapy
 Massage
 Respite Care
 Bereavement
 All clients eligible for all other Medicaid state plan benefits
including hospice and home health
Cost Containment/Effectiveness
 Preliminary cost data from fiscal 2012-2013 indicates
the waiver is cost effective
 Average per capita cost with state plan services - $61,808
 Institutional cost per capita - $100, 773
 Waiver is up for renewal by CMS in 2015
Brian Greffe, MD –
Brian.Greffe@childrenscolorado.org
Candace Bailey – Candace.Bailey@state.co.us
California’s Pediatric Palliative Care
Waiver Program
Department of Health Care Services
Jill Abramson, MD,MPH
April 16, 2014
Outline





Overview
Services
Updates
Issues
Next Steps
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
*
CCSNL
• 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
PFC Services





Care coordination (RN + SW)
Massage/ art/ music
Respite
Pain/Symptom management
Family Counseling/bereavement
Enrollment
 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
PFC evaluation
 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 Family Satisfaction: 9.0 to 9.8
For Most Services
PFC Family Satisfaction: 9.0 to 9.8
For Most Services
9.8 9.8
9.7
9.8
9.8
9.6
9.3
9.0
Care coordination Support from care
coordinator
Ability of care
coordinator to
listen and be
sensitive
First follow-up
9.1
9.2
24/7 nurse phone Pain management
line
service
Second follow-up
PFC evaluation – $2848
pmpm cost savings
Note: Change in ER costs was low and was omitted
Source: UCLA analysis of PFC enrollees’ claims data
Updates
 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?
Next Steps





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
Contacts and Resources
 Jill Abramson, MD, MPH
Partners for Children state lead, DHCS
Jill.Abramson@dhcs.ca.gov
 Partners for Children:
http://www.dhcs.ca.gov/services/ppc/Pages/default.aspx
ccsppc@dhcs.ca.gov
 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.
Redesign Medicaid in New York State
Children’s Hospice International
Annual Conference/Webinar
April 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
EAM04@health.state.ny.us
Carol 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.org
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 communitybased 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
13th Annual ChiPACC Conference
With technical assistance from
Centers for Medicare & Medicaid Services
DISCUSSION
MELISSA HARRIS Facilitator
© Children’s Hospice International
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