In-home Pediatric Care And The Law - AAP

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In-Home Pediatric Care: Children NeedIt and the Law Requires ItSessions # 13035/14023Section on Home Care, AAPNational Health Law ProgramDouglas McNeal, MD, FAAPmdrdoug@aol.comJane Perkins, J.D. MPHperkins@healthlaw.org

Disclosure InformationAAP 2015 NATIONAL CONFERENCE, OCTOBER 23-27Speaker Name: Douglas McNeal, MDDisclosure of Relevant Financial Relationships:In the past 12 months, I have had the following financial relationships todisclose:Consultant for:Integrity Health CareSpeaker name: Jane Perkins, J.D. MPH I have no financial relationships todisclose.Disclosure of Off-Label and/or investigative uses:We will not discuss off label use and/or investigational use in this presentation

PEDIATRIC in Home Health Care Why is it important to pediatricians? Why are the EPSDT MANDATES important? Why is it important to patients and families ? What services does EPSDT cover? How do we access services and funding sources? How do I advocate for services in my state?

This is whathappenswhen your children takeaway your driver’s license

PediatricHome HealthCare

PediatricHome HealthCare

PediatricHome HealthCare

Sometimes primary care providers as wellas parents and other care team members,incorrectly assume the comprehensive needsof a child with medical complexity are beingaddressed by someone else. As a result,omissions and other errors in care occur.Reference: The Landscape of Medical Care for Children with MedicalComplexity, special report by the Children’s Hospital Association June 2013 page6

Pediatric Home Health Care History Home health care was the fastest growingdivision of personal health care spending inthe early 1990’s. The Centers for Medicare and MedicaidAdministrator designated pediatrics as thefastest growing segment within home healthcare.

Pediatric Home Health Care The American Academy of Pediatrics has created theSection on Home Care The AAP publishes: GUIDELINES FOR PEDIATRICHOME HEALTH Reference based on best practices “Home care is an integral and essential part of themedical home that we advocate for every child.” (Editors)Reference: GUIDELINES FOR PEDIATRIC HOME HEALTHCARE, 2nd edition AAP

Factors Cost Shifting- lower cost at home. States are shuttingdown institutions and shifting to community facilitiesi.e. group homes or in home placement Increase need for service Growing number of infants and childrendependent on life sustaining technology forsurvival ventilators/oxygen/gastrostomytubes/tracheostomy tubes

FACTORS Increased number of premature infants with associatedrespiratory, cardiac, and feeding problems More than 40% of extremely small 800 gms and premature infants 26weeks will survive 1 in 5 of these infants has a major neurodevelopment disorder- C.P.,M.R., Visual or Hearing Impairment Average cost for caring for a low birth weight infant in NICU is 72,000 Estimated savings of 20,000 after transitioning from NICU to homeReference: GUIDELINES FOR PEDIATRIC HOME HEALTH CARE 2nd editionAAP

Why is Home Health Care Important toPrimary Care? Medical Home Model (AAP) The primary health care professional can help the family and patientaccess and coordinate specialty care, other health care services,educational services, in and out of home care, family support, andother public and private community services that are important to theoverall health of the child and family. The overarching goal of home health care is to optimize each child’shealth and function while minimizing recurrent or prolongedhospitalizations through the provision of comprehensive, costeffective, family-centered health care rendered in a nurturing homeenvironment. (Elias, Murphy, and the Council on Children withDisabilities, Pediatrics 2012; 129; 996)

Health Home Model (Centers for Medicare & MedicaidServices)Section 2703 of the Affordable Care Act, entitled “StateOption to Provide Health Homes for Enrollees with ChronicConditions”“Health home providers with which the State collaborates--caring not just for an individual’s physical condition, butproviding linkages to long-term community care servicesand supports, social services, and family services.”“CMS envisions a health home model of services deliverywith either a fee-for-service or capitated payment structure”Mandated service under EPSDT (HCY)Beneficial to our patients and their families

(EPSDT): Overview--1967Early Periodic Screening, Diagnostic and TreatmentMedicaid’s Federal child health program for youth 0 to 21years old: Federal Law defines very comprehensive benefits different fromadults. State‐specific financial eligibility criteria for entry Goal: Identify early, access TX and monitoring so “handicaps do not goneglected”Five screens required at specific intervals AND whenproblems: Physical and Mental Health, Vision, Hearing, and Dental Performed by Health Care Professional

EPSDTPowerful Federal Law for Children 0 to 21 Medicaid rules are different for children 0 to 21 Covers the full range of Health Care and Long Term Care Servicesand Supports Under Federal law, States are required to cover services and supportsunder EPSDT regardless of whether coverage for the sameservice/support is an optional or limited service for adults under the stateplan. Under Federal law, EPSDT programs are required to provide allnecessary services to “correct or ameliorate physical and mentalillnesses and conditions” discovered by routine screening.

EPSDT Services need not cure to be covered Services that maintain or improve the current health condition Maintenance services (services that sustain or support ratherthan cure or improve) may be eligible Services which prevent a condition from worsening or preventadditional health problem Physical and occupational therapy services can be coveredwhen they have an ameliorative or maintenance purpose.CMS: EPSDT, a Guide for States, June 2014 page 10

The EPSDT Benefits Physician services Prescribed medications Hospital services (outpatient and inpatient) Prosthetic devices Federally qualified health center services Other diagnostic, screening, Medical care or any other type of remedial preventive, and rehabilitative servicescare recognized under state law or furnished Nurse midwife and certified pediatricnurse practitioner services, to theby licensed practitioners within the scope ofextent that such services aretheir practice, as defined by state lawauthorized under state lawHome health care Case managementPrivate duty nursing services Respiratory carePersonal care services Any other medical or remedial careDental Servicesrecognized by the Secretary of HealthPhysical, Occupational,and Human Services (e.g.,and Speech Therapytransportation)

EPSDT: “All Medically Necessary ServicesMust be Provided for Conditions Discovered by theScreen” Key is “Conditions discovered by the screen” when PCP conducts the Healthy Children and Youth Evaluation, conditionmust be listed on the EPSDT screen to be covered. Medical necessity for home care requires level of care which exceeds family’sability to care for the individual at home. EPSDT contains outreach and education requirements for each state. “Statesmust seek out eligible families and inform them of the benefitsof EPSDT and the health and long-term care services and assistance availableunder the broad parameters of EPSDT law.42USC1396a(a)(43) (examples of state-to-state variation in HO—OH & AR)

EPSDT “The EPSDT program is an important but underusedMedicaid benefit because of poor awareness andunderstanding of the program”Reference: Guidelines for Pediatric Home Health Care, 2nd edition AAPPage 39 Uneven access to services comes from state-specific variability inprogram implementation and interpretation of federal law.

THEAUTHORITATIVEREFERENCE

Why is Home Care Important toFamilies ?

NOT HOME:A DOCUMENTARY ABOUT KIDS LIVING IN NURSING FACILITIESA film by: Narcel G. Reedus

Stressors Emotional impact on families Increase in single parent household Increase in divorce Siblings- increase in behavioral problems and academic failure Social Isolation Increase in abuse and neglect Long-term follow up demonstrated that family stress canincrease over time when caring for a child with disabilities(Glidden and Jonson, Mental Retardation; 1999;37:16-24)

Stressors Cont. Financial Strain Limitation of employment 54% reported that a family member stopped working because of thechild’s health 45% reported that a family member cut back on working hours to care forchild(Kuo and Cohen, Arch Pediatr Adolesc Med/Vol 165 (No. 11) Nov2011.) For families that incurred out of pocket medical cost for their child withspecial health care needs (CSHCN) their costs represented 2.2-3.9% ofincome(Porterfield and Derigne, Pediatrics 2011:1128:892) 20% of families raising a CSHCN report financial problems attributed totheir child’s condition (Porterfield and Derigne)

58% of parents/caregivers report spending more than 40 hours per weekproviding support for their loved one with I/DD, including 40% spendingmore than 80 hours a week. Nearly half (46%) of parents/caregivers report that they have morecaregiving responsibilities than they can handle. The vast majority of caregivers report that they are suffering from physicalfatigue (88%), emotional stress (81%) and emotional upset or guilt (81%)some or most of the time."Still In The Shadows With Their Future Uncertain"www.thearc.org/document.doc?id 3672

Providers Skilled Nursing: Intermittent or hourly on a short term basis Accounts for approximately 90% of home health visits vs.continuous care Duties Phototherapy and daily lab draws Neonatal follow-up and general newborn care Mother/baby follow-up visit with breast feeding education Infusion/antibiotic therapy including growth hormone Wound care Instruction in the use of feeding pumps and G-tube care,suction equipment, tracheostomy care, ventilators, apneamonitors, and oxygen Shift 1-4 hours

Private Duty Nursing Complex nursing care for a patient with a more CONTINUOUSneed for skilled services RN or LPN depending on the skills needed Shifts (8 to 12 hours) Level of care exceeds the family’s ability to care for the patient athome Medical necessity/EPSDT standards will determine services

Private Duty Nursing Duties Medications-IV,IM,PO Parental Nutrition Tracheostomy Care Oxygen Supplement/Monitoring Enteral Feedings Peritoneal Dialysis Ventilator Dependency

Private Duty Nursing Medical diagnosis may be related, but not limited to Severe neuromuscular, respiratory or cardiovascular diseaseChronic liver or gastrointestinal disorders associated withnutritional compromiseMultiple congenital anomalies or malignancies with severeinvolvement of vital body functionsSevere infections that require prolonged treatmentSevere immune deficiency diseases and metabolic diseases,including AIDS

Gastostomy Improved weight gain after G-tube placementhas been demonstrated in children withcerebral palsy who were previously failing tothrive. Controversy exists over increased riskof death and gastroesophageal refluxfollowing G-tube placement. Maternalcaregivers for children with a gastrostomytube may spend up to 8 hours per day oncare activities, compared with 3 hours forchildren without gastrostomy tubes. Parentsof children with gastrostomy tubes alsoexperience higher out-of-pocket expenses fortheir child when compared to childrenwithout gastrostomy tubes.

Personal Care Aide Assist with activities of daily living (ADLs) Dressing and grooming Bathing and personal hygiene Toileting and continence Ostomy and catheter hygiene Transferring Eating

Personal Care Aide cont. Eligibility is determined by medical necessity/EPSDT standards Examples Poorly controlled seizures (other than grand mal) Assistance with orthotic bracing, body casts Incontinence of bowel and/or bladder after age three (chronicbedwetting and encopresis excluded) Significant CNS damage affecting motor control Assistance with age-appropriate activities of daily living (childrenwith a diagnosis of developmental delay or intellectualdisability may be eligible for personal care. If their ability toperform age-appropriate care is impaired)

Personal Care Aide cont. The presence of a parent or other caretaker does notpreclude eligibility for personal care. If a parent mustbe gone from the home when the personal care isneeded, a personal care aide may deliver the servicewhile the parent is absent, as long as the child has amedical need for the service “Historically the service has been utilized by fewchildren”Reference: The MO HealthNet Personal Care Manual,Section 13.10

Personal Care Aideis NOT appropriate. When there is no documented medical needfor care For cases that require skilled nursing-levelservices only. The family needs: Respite or baby-sitting services Homemaker-only service

Personal Care AideCase where personal care assistance is appropriate.A 13-year-old who uses a wheel-chair needsassistance with breakfast and getting ready forschool. Parent must leave for work at 6:30 in the morning, tooearly to get the child ready for the bus. Because ADLs for a typically developing 13 year-old include theability to make his own breakfast, get dressed for school, and bewaiting for the bus independently; personal care assistance isappropriate with a care plan specific to his needs.

Personal Care AideCase where personal care assistance is appropriate.A 15-year-old child with significant motor and/orneurocognitive/behavioral impairments whoweighs 150 lbs. The parent is at home, and is available to provide the care;however, the child is too large for the parent to managesafely alone in the family home.Personal care assistance is appropriate for this youth with acare plan specific to his needs.

Personal Care AideCase where Personal Care assistance is appropriate.5 year-old child needs personal care due to amedical condition. Parent has four children, ages 5 and under. The other three children have no medical problems. Parent is available in the home. If the child were an only child, personal care is questionable, inspite of the disability, because of the availability of the parent.The needs of the 3 additional young children render the parentunavailable to meet the extra personal care needs of the child withdisabilities.

Personal Care AideClients by Diagnosis Total: 50 Muscular Dystrophy: 6 Autism: 9(1 Down Syndrome, 1 Shaken BabySyndrome) Rett Syndrome: 1 Rohhad’s Disorder: 1 Myotonic Dystrophy: 2 Hydrocephalus: 1 Shaken Baby: 2 (1 Autism) Metabolic: 2 Chromosome Anomaly: 3(2 Down Syndrome) Intellectual Disability (MR): 3 Spina Bifida: 2 Cerebral Palsy: 19Multiple Congenital Anomalies: 1Brain Injury: 1

Survey ResultsNursing and Personal Care Aide

Survey Results for NursingAge at ReferralReferredPCAPDNAge of DiagnosisDiagnosisINFANT */6 YEARSOTHER PARENT 5 WEEKSBRAIN INJURY8 YEARSOTHER PARENT 2 .5 YEARSRETT SYNDROME11 YEARSPARENT 8 MONTHSQUAD C.P.6 YEARS PARENT BIRTHDOWNS,AUTISM4 YEAROTHER PARENT BIRTHSEVERE C.P.5 MONTHSPARENT BIRTH10 MONTHSCASE MANAGER 15 MONTHSJARCHO LEVINSYNDROMERETT SYNDROME5 YEARSCASE MANAGER 1.5 YEARS14 YEARSCASE MANAGER 6 MONTHS PFEIFFER’SSYNDROMECEREBRAL PALSY

Survey Results for Nursing cont.Age at ReferralReferredBIRTHPCAPDNAge of DiagnosisDiagnosisHOSPITAL BIRTHCEREBRAL PALSYBIRTHHOSPITAL 1 MONTHBIRTHHOSPITAL 6 MONTHSBIRTHHOSPITAL HALYSEVERE C.P.5 MONTHSHOSPITAL 5 MONTHSCEREBRAL PALSY6 MONTHSHOSPITAL 6 MONTHSSHAKEN BABY9 MONTHSHOSPITAL BIRTHCEREBRAL PALSY1 YEARHOSPITAL 11 MONTHS2 YEARSHOSPITAL BIRTH14 YEARSHOSPITAL BIRTHLARSEN’SSYNDROMETETROLOGY OFFALLOTCEREBRAL PALSY23 YEARSHOSPITAL 9 YEARSDUCHENE’S M.D.

Survey Results for Nursing cont.Age at ReferralReferredBIRTH2 MONTHSPDNAge of DiagnosisDiagnosisDOCTOR BIRTHHYDROCEPHALUSDOCTOR/HOSPITALDOCTOR BIRTH BIRTHDOCTOR/HOSPITALDOCTOR/HOSPITAL 1 MONTH BIRTH1 YEARDOCTOR INA BIFIDA3 YEARSDOCTOR 3 YEARS5 YEARSDOCTOR BIRTH12 YEARSDOCTOR 1 YEAR17 YEARSDOCTOR 20 MONTHSMOWAT‐WILSONSYNDROMEDUCHENES M.D.21 YEARSDOCTOR 5 YEARSDUCHENE’S M.D.3 MONTHS6 MONTHS1 YEARPCACENTRALHYPOVENTILATION SYNDROMEEPILEPSY

Survey Results for Nursing cont.Age at ReferralReferred10 YEARSREGIONAL CENTER10 YEARSREGIONAL CENTER13 YEARSREGIONAL CENTER17.5 YEARSPCAPDNAge of DiagnosisDiagnosis 4 MONTHSAUTISM,EPILEPSY 4 MONTHSDOWN SYNDROME 11 YEARSREGIONAL CENTER 25 YWALKERMALFORMATION,SEIZURES,GASTROSTOMY12 YEARSBSHCN BIRTH1.5 YEARSTHERAPIST BIRTHCHARGESYNDROMECEREBRAL PALSY1.5 YEARSTHERAPIST UNKNOWNUNKNOWN2 YEARSSOCIAL WORKER 2 YEARS5 monthsFRIEND(NURSE) 4 MONTHS6 YEARS? 4 YEARSUNKNOWNNEUROMUSCULARPETERS PLUSSYNDROMEMEROSINDEFICIENCYMUSCULARDYSTROPHY

Survey Results for Personal Care AideAge at ReferralReferredPCAAge of DiagnosisDiagnosis3 yearsRegional Center BirthCerebral Palsy4 yearsHospital 2 yearsCP/MR7 yearsDoctor BirthCerebral Palsy7 yearsDFS 8 monthsCP/Seizure Disorder16 yearsSocial Worker BirthCerebral Palsy?BSHCN InfantMR/ChromosomalDuplication?BSHCN InfantMR/ChromosomalDuplication16 yearsFriend 10 monthsTrisomy 8p9 yearsHospital BirthMR/CP

Survey: Home Health Care Referral—Referral Source,age, delay in referralPersonal Care AidePrivate Duty Nursing 1/8 referred by doctor 8/42 patients referred by doctor 1/8 referred by hospital 3/42 patients referred by Dr/hospital 10/42 patients referred by hospital 6/ 42 referred by parentRange in age at referral 0-16 yrs.Mean delay from Dx 7 yrs.Range in age at referral 0-17 yrs.Mean delay from Dx 6 yrs.Conclusions Significant delays between dx. and referral for home health services Majority of referrals do not currently involve doctors or therapists .WE can prevent that delay

CHANGES YOU MAY WISH TO MAKE IN YOURPRACTICE 1) Assesseach patient with a cognitive and or physical disabilityregarding the need for in home services 2)Assist them in accessing services 3) Advocate for HOME BASED SERVICES in your state

Advocating for EPSDT in-home services:What pediatricians can do Seek coverage for individual patients Help address systemic problems & improve the benefit

Do the health care needs of your patient fit withinthe scope of benefits?Mandatory servicesPhysician servicesLaboratory/x-rayIn-patient hospitalOutpatient hospitalHome health care*Nursing facility servicesEPSDTOptional Services (for adults)Prescription drugsTransportationDental servicesLanguage servicesPhysical & other therapies Licensed practitionersPrivate duty nursingCase managementHome health care*Personal care servicesRehabilitative servicesPreventive servicesNot covered: respite, home modifications, habilitativeservices

Are the health care needs of your patientmedically necessary under EPSDT? Will the health care, treatment or other measures Correct or ameliorate the patient’s condition?

EPSDT Easy 1,2,3A written request that includes: The physician’s prescription/orders on a claim/EPSDT Screenform Include justification from physician & other providers, including: Patient history, including past Tx/services Include role of caregiver, including their history ofcaregiving Diagnosis/prognosis Description of benefits being requested Length of time the service/Tx is needed

EPSDT Easy 1,2,3written request (con’t) When appropriate, include product information on: How an item will meet the child’s need Photographs/videos illustrating use Note: “These services are being requested under the MedicaidEPSDT benefit to correct or ameliorate my patient’sphysical/mental conditions.”

A word about Medicaid managed careWhen State Medicaid agencies contract with at-risk heal

The American Academy of Pediatrics has created the Section on Home Care The AAP publishes: GUIDELINES FOR PEDIATRIC HOME HEALTH Reference based on best practices “Home care is an integral and essential part of the medical home that we advocate for every child.” (Editors) Reference: GUIDELINES FOR PEDIATRIC HOME HEALTH

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