© 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: Info@CHIonline.org

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

Dusty.Edwards@flhealth.gov

Claire Anthony-Davis, RN

Florida Agency for Health Care Administration

Claire.Davis@ahca.myflorida.com

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

CONTACTSBrian Greffe, MD –

Brian.Greffe@childrenscolorado.orgCandace Bailey – Candace.Bailey@state.co.us

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, DHCSJill.Abramson@dhcs.ca.gov

Partners for Children: http://www.dhcs.ca.gov/services/ppc/Pages/default.aspx ccsppc@dhcs.ca.gov

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

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 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:

Melissa.Harris@cms.hhs.gov

CHI:armstrongdailey@chionline.orgJohn.Gould@APORTER.COM

Mahnu.Davar@APORTER.COMDavid.Pore@APORTER.COM