Improving Health Outcomes for Children and Youth with Special Health Care Needs through, Initiatives, Partnerships and Innovation Kentucky Primary Care.

Improving Health Outcomes for Children and Youth with Special Health Care Needs through, Initiatives, Partnerships and Innovation Kentucky Primary Care Association Fall Conference 2017 November 8-10, Lexington, KY

The Kentucky Commission for Children with Special Health Care Needs
Judy Ann Theriot, MD, CPE Medical Director, CCSHCN Professor of Pediatrics, University of Louisville

Learning Objectives After this presentation, you will be able to:
Understand the KY CCSHCN; History and service Explain how CYSHCN are defined and the estimated state and nationwide prevalence Discuss innovative strategies developed by the CCSHCN to improve access to care in rural areas Discuss a few Collaborative Partnerships that address the health of the CYSHCN population Describe the KY Early Hearing Detection and Intervention program as a population health service

Setting the stage for population health
Pop. health is not just the overall health of a population it also includes the distribution of health within that population Right side of the figure indicates different determinants of health each determinant has a biological impact on the individual and population health outcomes To really impact the health of a population you need to expand services into these different domains How does the commission effect health outcomes for CYSHCN

Our Commission History:
1924 General Assembly established the Kentucky Crippled Children’s Commission. Initial budget $10,000 3 employees: Executive Director, Secretary and a Nurse Nurse hired Feb. 1925 First clinics spring of 1925 in Paducah

Picture from 1927 In the first year the CCSHCN saw 704 patients in clinics and admitted 213 to the hospital

1927 After clinic the children that needed to be hospitalized for treatment were taken to a hospital in Louisville, Lexington or Ashland where they stated for several months. The Commission partnered with the railroad and the children were transported FOR FREE Commission also partnered with the hospitals for free or reduced rates for the children $10,000 dollars didn’t go very far in providing services for all of the children that needed them so the Commission had partners from the beginning to help. In 1925 Kosair Charities gave 30,000 dollars to the commission to make budget

1935: Social Security Act signed by FDR
Title V of the SSA set up funds specifically for mothers and children Home visitation programs Funds for CYSHCN services Funds for Physicians, dentists, public health nurses, medical social workers and nutritionists In 1935 help came when FDR signed the Social Security Act

Children and Youth with Special Health Care Needs (CYSHCN)
Are Defined As: Children who range from birth to age 21 who have, or are at increased risk for, a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally Source: 2012 Department of Health and Human Services

Prevalence in the United States
19.35% of all children Prevalence in the United States 14,197,940 This is the prevalence estimate of children and youth with special health care needs based on a large scale survey that MCHB sponsors and the Census Bureau Conducts They found that, in 2016, approximately 19.35% of children have a special health care need, which equates to approximately 14 million children. Source: 2016 National Survey of Children’s Health

Prevalence in Kentucky
25.39% of all children Prevalence in Kentucky 255,913 In Kentucky, the prevalence is 25.39%-- statistically higher than the rest of the country– which equates to 255,913 children Population 4,413,457 (2014 census) 838,557 live below the poverty level (19%) 26% of KY children live in poverty (national number is 22%) 64% of KY children have free or reduced lunch several Appalachian counties are >80% 97,467 children had an IEP in school 5,381 had an educational label of ASD Source: 2016 National Survey of Children’s Health

Primary and Preventive Health Care Services
Direct Services Primary and Preventive Health Care Services Public Health Services and Systems Audiology Hearing Testing Hemophilia Treatment Lab Tests and X-Rays Nutrition Counseling Occupational Therapy Specialty Clinics Physical Therapy Speech Therapy Case Management Care Coordination Family to Family Medically Complex Foster Care Support Outreach, engage community partners Telemedicine Transportation Interpreters Infrastructure to carry out services MCH needs assessment Partnerships and collaborations Regulations and policies Data collection Strategic planning Quality improvement Newborn hearing screening This is the pyramid and list of essential services from MCHB On this pyramid, we have direct services, primary and preventive, and public health services and systems… moving down the pyramid, we have essential services by domain, such as access to care in the first one, informing and educating the public in the second, and assessing and monitoring status at the bottom For this pyramid, I’ve filled in what type of services the commission provides that fall into each domain DIRECT- clinics, testing PRIMARY/ PREV- coordination, outreach, case management PUBLIC HEALTH SERVICES AND SYSTEMS- data collection, surveillance, and needs assessment Kentucky CCSHCN Pyramid Overview of Essential Services

Needs Assessment Federal Guidance CCSHCN Strategic Plan
Regional Staff Focus Groups National Survey Data Service Data Stakeholder Meeting Federal Guidance CCSHCN Strategic Plan Standards for Systems of Care for CYSHCN Patient Surveys Quantitative Data Capacity Assessment Process: CCSHCN Leadership Qualitative Data Stakeholder Ranking MCH Data Briefs Priority Identification Planning Committee Input School Health Data The needs assessment Kentucky CCSHCN Performance Measures and Public Health Work

KY CCSHCN Mission: To enhance the quality of life for Kentucky’s children with special health care needs through quality service, leadership, advocacy, education and collaboration. Total population of children to be served indirectly through system strengthening and essential services 255,913 70,000 8,400 The mission is to enhance the QoL for ALL of KENTUCKY’s children with special health care needs– all 255,913 of them. We provide enabling and preventive services to 70,000 (27%) AND 8400 are served DIRECTLY in clinic and non-clinic encounters (3%) Subpopulation of children and youth who receive enabling and preventive health services Subpopulation of children and youth who meet eligibility criteria and are served directly in CCSHCN medical clinics or non-clinic encounters

Commission for Children with Special Health Care Needs
Regional Offices Satellite Clinics Lexington Maysville Morehead BOONE KENTON Louisville CAMPBELL GALLATIN PENDLE- TON BRACKEN CARROLL GRANT Ashland TRIMBLE Elizabethtown ROB- ERT- SON MASON OWEN LEWIS GREENUP HENRY HARRISON OLDHAM FLEMING BOYD SCOTT NICHOLAS CARTER Owensboro SHELBY FRANK- LIN BOURBON JEFFERSON BATH ROWAN ELLIOT WOOD- FORD SPENCER ANDER- SON FAYETTE LAWRENCE MONTGOMERY Pikeville MEADE BULLITT CLARK MENIFEE MORGAN JESSA- MINE HANCOCK POWELL JOHNSON MARTIN HENDERSON BRECKINRIDGE NELSON MERCER WOLFE Paducah DAVIESS WASHINGTON MADISON ESTILL MAGOFFIN UNION HARDIN BOYLE GARRARD LEE FLOYD WEBSTER McLEAN MARION LARUE BREATHITT PIKE OHIO GRAYSON LINCOLN JACKSON OWSLEY CRITTENDEN TAYLOR KNOTT HOPKINS HART CASEY ROCKCASTLE PERRY LIVINGSTON BUTLER GREEN Direct care is very expensive 11 offices across the state plus satellite locations (locations where we go and assist providers with their clinics). We contract with specialty pediatric providers. Mainly through the University of KY and University of Louisville our two largest teaching hospitals One takes East side of State other West side to travel to our office locations to eliminate the travel burden for our families One important reason providers continue to provide services in our clinics because we make it very easy for them. We schedule, bill, develop care plans and coordinate care. MUHLENBERG EDMONSON CLAY CALDWELL LETCHER BALLARD McCRACKEN ADAIR PULASKI LAUREL LESLIE Prestonsburg LYON WARREN BARREN RUSSELL CARLISLE MARSHALL CHRISTIAN METCALFE LOGAN KNOX TRIGG WAYNE HARLAN TODD CUMBER- LAND GRAVES ALLEN WHITLEY BELL Hazard HICKMAN SIMPSON CALLOWAY MONROE CLINTON McCREARY FULTON Bowling Green Somerset Corbin Harlan Barbourville Manchester

Direct Services Primary and Preventive Health Care Services Public Health Services and Systems Looking back at our pyramid… Kentucky CCSHCN Pyramid Overview of Essential Services

Direct Services Primary and Preventive Health Care Services Public Health Services and Systems Direct care is very expensive! KY is a rural state….. 41% of our population lives in a rural county, Although direct care is expensive it is essential in order to provide access to care to our rural population. But in order to reach more families we need to move down the pyramid, and do more programing at that level wich will bring services to a greater number for CYSHCN and its cheaper! Kentucky CCSHCN Pyramid Overview of Essential Services

System of Care A spectrum of effective community-based services and supports for CYSHCN and their families that is organized into a coordinated network, builds meaningful partnerships with families and youth, and addresses their cultural and linguistic needs in order to help them function better at home, in school, in the community, and throughout life. Population health relies on a comprehensive, efficient, system of care that is culturally diverse and based on quality Our offices are in the local communities and have been there for almost 100 years, we are a trusted part of the community and are a natural community leader to create and maintain meaningful partnerships But this can be challenging…

6 Core Outcomes for Systems of Care for CYSHCN
Families as partners Medical homes Financing of care for needed services Community-based services Early and continuous screening Effective transition to adult health care These are MCHB’s 6 core outcomes for a comprehensive system of care. This has evolved and now there has been a national standards version 1.0 and version 2.0 and these standards include these concepts. But in the meantime, we can assess how we’re doing in creating a quality and comprehensive system of care using these 6 outcomes. Developed by HRSA and MCHB

MCHB Core Outcome #1 CSHCN whose families are partners in shared decision-making for child’s optimal health MCHB Core Outcome #2 CSHCN who receive coordinated, ongoing, comprehensive care within a medical home Outcome #3 CSHCN who have consistent and adequate public or private insurance Outcome #4 CSHCN who are screened early and continuously for special health care needs Outcome #5 CSHCN who can easily access community based services Outcome #6 CSHCN youth who receive services needed for transition to adulthood Like I said, we organized the data by MCHB Outcome, which is over on the right side. On the left, we can see how Kentucky measures up to the rest of the country. In this case, in terms of shared decision-making, Kentucky did slightly better. Notes on the measure from childhealthdata: Variable Name: MCHB Core Outcome #1: Families are partners in shared decision-making for child's optimal health Survey Items: C6Q21, C6Q22, C6Q23, C6Q24 Denominator: CSHCN age years Numerator: CSHCN whose families usually or always feel that they are partners in decision making around issues important to their child's health; Outcome not successfully achieved Revisions and Changes: The items used to develop this measure were revised substantially between 2005/06 and 2009/10. This measure is now based on whether CSHCN have families who usually or always feel that they: 1) discuss with providers a range of options to consider for their child's treatment; 2) are encouraged to ask questions or raise concerns; 3) it is easy to ask questions or raise concerns; and 4) their health care providers consider and respect what treatment choices the parent feels would be best for child. This outcome should not be compared with the results from outcome #1 from the 2005/06 NS-CSHCN. Additional Notes: To positively meet this indicator, responses of usually or always to all items must be scored. Any response of never or sometimes to any item would score the indicator in the negative. Responses to all items were required. All repondents with don't know or refused to any item were set to missing. Treatment of Unknown Values: Unknown values (responses coded as 'refused', 'don't know', or system missing) are not included in the denominator when calculating prevalence estimates and weighted population counts displayed in the data query results table. In nearly every case, the proportion of unknown values is less than 1% and the exclusion of these values does not change the prevalence estimates (%) and only marginally affects the weighted population counts (Weighted Est.). Exceptions are noted in the form of a Data Alert at the bottom of a results table. History and Development: The Maternal and Child Health Bureau leads the development of the NS-CSHCN survey, indicators and performance measures, in collaboration with the National Center for Health Statistics (NCHS) and a national technical expert panel. The expert panel includes representatives from other federal agencies, state Title V leaders, family organizations, and child health researchers. Previously validated questions and scales are used when available. Respondents’ cognitive understanding of the survey questions is assessed during the pretest phase and revisions made as required. All final data components are verified by NCHS and DRC/CAHMI staff prior to public release. Data source: 2009/10 National Survey of Children with Special Health Care Needs

CSHCN who can easily access community based services
MCHB Core Outcome #1 CSHCN whose families are partners in shared decision-making for child’s optimal health Outcome #2 CSHCN who receive coordinated, ongoing, comprehensive care within a medical home Outcome #3 CSHCN who have consistent and adequate public or private insurance Outcome #4 CSHCN who are screened early and continuously for special health care needs Outcome #5 CSHCN who can easily access community based services Outcome #6 CSHCN youth who receive services needed for transition to adulthood Outcome 5 tells us how easily children, youth, and their families can access services. Here we do a little worse than the rest of the country. This tells us that, in Kentucky, almost 40 % of CSHCN families reported having difficulties or being frustrated accessing services that their child needed in the past 12 months Information about the measure from childhealthdata.org: Variable Name: MCHB Core Outcome #5: Community-based service systems easy to use Survey Items: C4Q03_A, C4Q03_B, C4Q03_C, C4Q03_D, C4Q03_E, C4Q03_F, C4Q04 Denominator: CSHCN age 0-17 years Numerator: CSHCN whose families report no difficulties or frustration accessing services needed for their child in the past 12 months; CSHCN who did not achieve this outcome Revisions and Changes: These items were substantially revised in This measure is now comprised of six difficulties with accessing care: 1) not eligible for services; 2) services not available in your area; 3) waiting lists or other problems getting appointments; 4) issues related to cost; 5) trouble getting the information you needed; 6) any other difficulties not mentioned AND an assessment of how often parents were frustrated in their efforts to get services. Those CSHCN in the numerator answered YES to one of the six difficulties and usually or always to the frustration item. This measure is not comparable to outcome #5 from the 2005/06 NS-CSHCN survey. Additional Notes: When answering, respondents are asked to "think about child's health needs and all the services he/she needs" -- including early intervention programs, childcare facilities, vocational education and rehabilitation programs, and other community programs." In order to meet outcome #5, responses of no are required on items C4Q03_A through C4Q03_F. If any difficulty was encountered on any of the items (answers of yes), then the child did not meet outcome 5. In addition, responses of never or sometimes feeling frustrated in efforts to get services are required on item C4Q04 in order to meet outcome #5. If parents report usually or always feeling frustrated in efforts to receive services, then outcome #5 is not met. Treatment of Unknown Values: Unknown values (responses coded as 'refused', 'don't know', or system missing) are not included in the denominator when calculating prevalence estimates and weighted population counts displayed in the data query results table. In nearly every case, the proportion of unknown values is less than 1% and the exclusion of these values does not change the prevalence estimates (%) and only marginally affects the weighted population counts (Weighted Est.). Exceptions are noted in the form of a Data Alert at the bottom of a results table. History and Development: The Maternal and Child Health Bureau leads the development of the NS-CSHCN survey, indicators and performance measures, in collaboration with the National Center for Health Statistics (NCHS) and a national technical expert panel. The expert panel includes representatives from other federal agencies, state Title V leaders, family organizations, and child health researchers. Previously validated questions and scales are used when available. Respondents’ cognitive understanding of the survey questions is assessed during the pretest phase and revisions made as required. All final data components are verified by NCHS and DRC/CAHMI staff prior to public release. Sources: 2009/10 National Survey of Children with Special Health Care Needs

Access to Care from KY CCSHCN Survey
Nation: 65.1% Kentucky: 63.8% Access to Care from KY CCSHCN Survey DURING THE PAST 12 MONTHS, was there any time when your child needed health care but it was NOT received? Keeping mind the national survey data on the left, refer to CCSHCN data. This tells us that direct services clients are doing better than the rest of kids with special health care needs in KY. These are the kids in our direct care clinics! We are doing great helping them receive services but we need to do better and move down the pyramid Key strategies: Directory of CCSHCN Services, Hearing Trainings, Foster Care Support, Targeted Outreach, Spanish Support Groups Data sources: 2016 CCSHCN Survey, 2009/10 National Survey of Children with Special Health Care Needs

How are we serving the CYSHCN in Kentucky Through Collaborative
Partnerships and Innovation We know we are doing a great job serving the families that access our clinics; how can we expand that to reach more children….. Through collaborative partnerships and innovations

Initiatives and Innovation:
Data Advisory Council Telehealth Program Neurology Autism Hybrid Clinic program Children with Medical Complexity iCARE Initiative Special Needs Access Projects Early Hearing Detection and Intervention Learning Collaborative NAS program Here is a short list of things we have created over the past couple years to move down the pyramid

Collaborative Partnerships:
Autism Services with ULAC ULP Pediatric Sickle Cell Disease Program University of Louisville and University of Kentucky Child Neurology resident funding Public Health Norton Healthcare Spina Bifida Multidisciplinary Clinic Research Partnerships CMHC - Corbin Hybrid Clinic partners ULP Weiskopf CEC UK Healthcare

Data Advisory Council We have a data advisory council
Use the data to do a gap assessment and that information is used to create new services For example telehealth services

Telehealth April of 2013 started Telehealth clinics for Neurology patients in our Eastern KY offices Existing patients asked to participate in the pilot program Physicians, Families and Patients loved it! Increased the number of clinics we have in the rural areas Average 2-3 telehealth clinics each month in addition to our face to face clinics Expanded telehealth to our autism program

Hybrid Clinic Model Using existing infrastructure to provide more services to rural areas of the state We don’t have to provide the service, we can help someone else provide a service and close the gap in access to care

Overview of Hybrids We have the infrastructure, staff, equipment, why not open our doors to others? Staff are reminded we don’t have to touch the patients. Our role is to ensure access to care is available. That has been very hard shifted for our staff. These providers only need space periodically. Easier to travel and provide care when you don’t have to consider overhead. One barrier has been Stark Laws. Stark Laws basically states that we can provide our space for free if we are able to increase our business in some way. We have had to enter into small contracts with providers but basically on a per use basis so its still cheaper for them not to enter into leases elsewhere for the small number of clinics they will offer. I must add, we do not have staggering numbers, Providers are not knocking down our door but we have built the framework. Now we must see if it’s a success.

Hybrid Clinic Partners
University of Kentucky Hemophilia Pediatric Urology NICU Follow-Up Genetics University of Louisville Pediatric Dermatology Genetics Development Diabetes

Autism Spectrum Disorders
In the Fall of 2013 we began to explore the idea of adding Autism Spectrum Disorders to our eligibility list Prior to this we only provided medical clinics, adding ASD would make us branch out into Behavioral health The Advisory Council on Autism and the Office of Autism were formed about the same time

We Formed a Partnership with University of Louisville Autism Center, KAITTR, UK, EKU, CMHC Corbin, WKU KAITTR KY – Autism Initiative Treatment Training and Research

Autism Spectrum Disorder: ASD
ASD is complicated to diagnose and complicated to treat involving many different types of providers and disciplines Treatment needs change overtime as the child grows and enters the school system

Autism Spectrum Disorder: ASD
Best Practice utilizes a multidisciplinary approach to diagnosis and treatment In Kentucky there were very few comprehensive multidisciplinary ASD clinics before we started our program Very few ASD services located in rural areas 41% of KY population lives in a rural area 89% of counties are designated either medically underserved or a Health Provider Shortage Area No services that co-located medical and behavioral health treatment in rural areas

Commission/KAITTR ASD Clinics
Corbin CMHC/CCSHCN Owensboro Bowling Green Somerset JEFFERSON SHELBY BULLITT SPENCER OLDHAM HENRY TRIMBLE OWEN GRANT PENDLE- TON CARROLL GALLATIN BOONE KENTON CAMPBELL SCOTT HARRISON FRANK- LIN FAYETTE WOOD- FORD ANDER- SON BOURBON NICHOLAS MADISON CLARK MERCER BOYLE LINCOLN GARRARD JESSA- MINE ESTILL POWELL MEADE HARDIN NELSON BRECKINRIDGE GRAYSON LARUE MARION WASHINGTON HANCOCK DAVIESS OHIO UNION WEBSTER McLEAN HENDERSON BRACKEN MASON LEWIS FLEMING ERT- ROB- GREENUP BOYD CARTER ELLIOT LAWRENCE PIKE FLOYD MARTIN JOHNSON MAGOFFIN MORGAN MENIFEE ROWAN BATH MONTGOMERY LEE WOLFE BREATHITT OWSLEY LESLIE KNOTT LETCHER PERRY HARLAN WHITLEY BELL KNOX LAUREL CLAY JACKSON ROCKCASTLE PULASKI CASEY ADAIR TAYLOR GREEN WAYNE McCREARY RUSSELL CUMBER- LAND CLINTON HART WARREN LOGAN BARREN BUTLER ALLEN SIMPSON MONROE EDMONSON METCALFE HOPKINS CHRISTIAN TRIGG MUHLENBERG CRITTENDEN CALDWELL LYON LIVINGSTON TODD GRAVES MARSHALL CALLOWAY BALLARD McCRACKEN CARLISLE HICKMAN FULTON Paducah We used information from our gap assessment of the ASD services in our state to build partnerships surrounding ASD and ultimately created multidisciplinary ASD clinics Not every clinic looks the same – it depends on what is needed in that area of the state, what services we provide Paducah, Owensboro and Bowling Green offer treatment services Somerset and Corbin offer diagnosis and treatment Lexington has services available so we discontinued our ASD program in that location WE DO NOT WANT TO DUPLICATE SERVICES, WE WANT TO FILL GAPS IN SERVICES Child neurologist Child Psychiatrist Developmental Pediatrician Social Worker Case Manager Family support +/- Dietician +/- Speech Therapist

Commission/KAITTR ASD Clinics
Corbin CMHC/CCSHCN Owensboro Bowling Green Somerset JEFFERSON SHELBY BULLITT SPENCER OLDHAM HENRY TRIMBLE OWEN GRANT PENDLE- TON CARROLL GALLATIN BOONE KENTON CAMPBELL SCOTT HARRISON FRANK- LIN FAYETTE WOOD- FORD ANDER- SON BOURBON NICHOLAS MADISON CLARK MERCER BOYLE LINCOLN GARRARD JESSA- MINE ESTILL POWELL MEADE HARDIN NELSON BRECKINRIDGE GRAYSON LARUE MARION WASHINGTON HANCOCK DAVIESS OHIO UNION WEBSTER McLEAN HENDERSON BRACKEN MASON LEWIS FLEMING ERT- ROB- GREENUP BOYD CARTER ELLIOT LAWRENCE PIKE FLOYD MARTIN JOHNSON MAGOFFIN MORGAN MENIFEE ROWAN BATH MONTGOMERY LEE WOLFE BREATHITT OWSLEY LESLIE KNOTT LETCHER PERRY HARLAN WHITLEY BELL KNOX LAUREL CLAY JACKSON ROCKCASTLE PULASKI CASEY ADAIR TAYLOR GREEN WAYNE McCREARY RUSSELL CUMBER- LAND CLINTON HART WARREN LOGAN BARREN BUTLER ALLEN SIMPSON MONROE EDMONSON METCALFE HOPKINS CHRISTIAN TRIGG MUHLENBERG CRITTENDEN CALDWELL LYON LIVINGSTON TODD GRAVES MARSHALL CALLOWAY BALLARD McCRACKEN CARLISLE HICKMAN FULTON Paducah Corbin CMHC is one of our partnership sights. When doing our gap analysis we learned that they wanted to start an ASD clinic in their facility, had some staff but needed more to provide better services for families. We supply a dietician and a speech therapist to their once a month clinic to augment services provided by their SW, Child Psychiatrist, Psychologist Increasing access to care and NOT duplicating services

ASD Clinics and Patient Visits for FY 17
These clinics are very labor intensive! Each patient sees more than one provider average is 3.7 providers per patient visit. N, P, DB, CM, SW

Autism Case Management
Many need help with school advocacy and IEPs, family support groups, and depending on the age of the child: transitions to adult health care and adult hood, waiver programs and guardianship.

Autism Telehealth Encounters
In 2018 we will be expanding telehealth clinics significantly in Paducah

Kentucky ASD Specific Services
Louisville WCEC & Private Corbin CMHC/CCSHCN Owensboro Bowling Green Prestonsburg Somerset Lexington Richmond EKU JEFFERSON SHELBY BULLITT SPENCER OLDHAM HENRY TRIMBLE OWEN GRANT PENDLE- TON CARROLL GALLATIN BOONE KENTON CAMPBELL SCOTT HARRISON FRANK- LIN FAYETTE WOOD- FORD ANDER- SON BOURBON NICHOLAS MADISON CLARK MERCER BOYLE LINCOLN GARRARD JESSA- MINE ESTILL POWELL MEADE HARDIN NELSON BRECKINRIDGE GRAYSON LARUE MARION WASHINGTON HANCOCK DAVIESS OHIO UNION WEBSTER McLEAN HENDERSON BRACKEN MASON LEWIS FLEMING ERT- ROB- GREENUP BOYD CARTER ELLIOT LAWRENCE PIKE FLOYD MARTIN JOHNSON MAGOFFIN MORGAN MENIFEE ROWAN BATH MONTGOMERY LEE WOLFE BREATHITT OWSLEY LESLIE KNOTT LETCHER PERRY HARLAN WHITLEY BELL KNOX LAUREL CLAY JACKSON ROCKCASTLE PULASKI CASEY ADAIR TAYLOR GREEN WAYNE McCREARY RUSSELL CUMBER- LAND CLINTON HART WARREN LOGAN BARREN BUTLER ALLEN SIMPSON MONROE EDMONSON METCALFE HOPKINS CHRISTIAN TRIGG MUHLENBERG CRITTENDEN CALDWELL LYON LIVINGSTON TODD GRAVES MARSHALL CALLOWAY BALLARD McCRACKEN CARLISLE HICKMAN FULTON Ashland CMHC WCEC/CCSHCN Private & WKU Highlands/UK CCSHCN UK, Bundy, WCEC & CCSHCN Paducah CCSHCN, WCEC, Four Rivers CMHC Landscape today! Calloway County WCEC Elizabethtown WCEC

CoIIN: Collaborative Improvement and Innovative Network
Multidisciplinary team of federal, state, and local leaders working together to tackle a common problem Using technology to remove geographic barriers, participants with a collective vision share ideas, best practices, and lessons learned, and track their progress toward similar benchmarks and shared goals. CoIIN provides a way for participants to self-organize, forge partnerships, and take coordinated action to address complex issues through structured collaborative learning, quality improvement, and innovative activities. Works together to identify common aims and specific, measurable, action-oriented, realistic, and time-specific objectives to clearly describe what they are setting out to achieve; Identifies and utilizes evidence-based strategies to show how these objective will be accomplished; and Uses clear-cut metrics and shares real-time data to show what’s working and determine if the aim was achieved

Children with Medical Complexity CoIIN
Working with stakeholders from around the state to develop a system of care for CMC Parents of CMC Medicaid and MCOs University of Kentucky Healthcare and Department of Pediatrics University of Louisville Department of Pediatrics Norton Children’s Hospital KY is one of 10 states chosen to participate in the CMC CoIIN This is just starting so more to come on this topic

Sickle Cell Transition Program
Partnered with University of Louisville Physicians Pediatric Cancer & Blood Disorders Comprehensive Sickle Cell Clinic to create a Transition program Educate adolescents regarding their disease, medications and the adult healthcare system Prepare them to advocate for their health care needs Start the transition education at 12 yoa transition between 18 and 20 yoa

We are mandated by KRS to manage the state’s Newborn Hearing Data Base
Policies and Programs We are mandated by KRS to manage the state’s Newborn Hearing Data Base Kentucky’s Early Hearing Detection & Intervention (EHDI) program provides a hearing screening test to all babies before they leave the hospital Babies who fail their initial hearing screen or have risk factors for progressive or late-onset hearing loss, receive information about follow-up diagnosis and resources from our EHDI office Think about the population health slide from the beginning, policies and programs feed into health behaviors which goes to health outcomes The Commission is also working on policies and programs that effect health factors and health outcomes such as EHDI

HEARING LOSS FACTS 1-3 infants out of 1,000 births have a hearing loss
KY’s annual birth rate is about 53,000 10% of newborns who refer on their hospital screening will be identified with permanent childhood hearing loss (PCHL) 50% have an identified risk factor 1 in 50 NICU babies are born with, or eventually become D/HH 90 % of infants born with hearing loss have two hearing parents HEARING LOSS FACTS

DRAFT EHDI 101 PPT National EHDI Goals All infants will receive a hearing screening before 1 month of age Infants not passing the screening will receive appropriate audiologic and medical evaluation before 3 months of age All infants identified as deaf or hard of hearing will begin receiving early intervention services before 6 months of age 1-3-6 The Joint Committee on Infant Hearing (JCIH) was established in 1969 and brought together representatives from audiology, otolaryngology, pediatrics, and nursing. Originally it was formed by the American Speech Language Hearing Association (ASHA), the American Academy of Ophthalmology and Otolaryngology (AAOO) and the American Academy of Pediatrics (AAP). The goal was to make recommendations concerning newborn hearing screening and early identification of children with, or at-risk for hearing changes. The JCIH also outlined the following three major components of EHDI programs: Birth admission screening Follow-up screening and diagnostics Early intervention There have been multiple position statements released by the JCIH and the most recent in 2007 outlined the following items: Goals of universal newborn screening Diagnosis of all children with hearing changes by 3 months of age, and early intervention before 6 months of age The 2007 JCIH position statement also outlines that the EHDI system be centered on the medical home and should provide the child and family access to high-quality intervention technology and interdisciplinary intervention programs. Information systems should be designed to interface with electronic health records and should be used to measure outcomes and report the effectiveness of EHDI services at the community, state, and federal levels.

National EHDI Data 1-3-6 Goals
DRAFT EHDI 101 PPT National EHDI Data Goals 2014 National CDC EHDI Data % Screened: 97.9% (n=3,963,042) Prevalence of children who are deaf/hh: 1.6 per 1,000 screened % Screened before 1 month of age: 96.1% (n=3,724,684) % Diagnosed before 3 months of age: 71.3% (n=26,002) % Receiving Intervention before 6 months of age: 67.9% (n=2,717) Screening rates have seen the largest advancement over the last twenty years, improving to nearly 100% nationwide. This has led to increased numbers of children being identified as Deaf/HH. However, entry into early intervention lags behind at around 65% of children who are identified as Deaf/HH. This means that 35% of identified children do not receive early intervention (EI) services, mostly due to loss to follow-up and loss to documentation (LTF/D). The data show that while screening rates have increased, the percent reaching the guidelines is lower than the national goal. 96.1% of infants are being screened before the age of 1 month and only 71.3% of those who did not pass an initial hearing screening being identified by 3 months of age. Of those infants identified as Deaf/HH and referred to EI services, only 67.9% are receiving services before 6 months of age. The greatest challenge that has been identified is the Loss to Follow-up/Loss to Documentation (LTF/D) for diagnosis. This means that of children who do not pass an initial hearing screening, over 35% receive no formal identification due to this lapse in tracking and information. % Loss to Follow-up or Documentation: 34.4% (n=21,819)

Kentucky EHDI Data 1-3-6 Goals
DRAFT EHDI 101 PPT Kentucky EHDI Data Goals 2014 Kentucky CDC EHDI Data % Screened: 99.4% (n=53,822) Prevalence of children who are deaf/hh: 1.6 per 1,000 screened % Screened before 1 month of age: 96.9% % Diagnosed before 3 months of age: 74.1% % Receiving Intervention before 6 months of age: 66.1% % Loss to Follow-up or Documentation: 11.1% 99.8% screened excluding deaths and refusals Only 2/3 of the babies receiving EI get it before 6 months

Kentucky Specific Statistics
DRAFT EHDI 101 PPT Kentucky Specific Statistics 263,284 births 402 infants diagnosed with PCHL (1.5 per 1000) Approximately half were unilateral Approximately 40% of the children PCHL were diagnosed at birth

KY Children with Hearing Loss 2011-2016

EHDI Advisory Board Members: Parents EHDI staff Audiologists
First steps School of public health/epidemiologists (data people) Providers, ENT, Primary care, Neonatologists AAP EHDI Champion Hands and Voices (advocacy support group) Working to make our EHDI system better

EHDI Learning Community
Who is in the Learning Community? Parents of children that are D/HH Audiologists PCPs and their office staff Early intervention professionals Advocates (KY Hands and Voices) EHDI state coordinators AAP chapter Champion The families in our support group are Latino, so we also have Spanish interpreters as part of the group We provide dinner and child care

EHDI Learning Communities
Helping improve the quality of life for Children who are deaf or hard of hearing and their families by listening to their stories Educate LC about EHDI, Risk Factors, early intervention, linking to resources Develop a shared plan of care for all children who are D/HH The families in our support group are Latino, so we also have Spanish interpreters as part of the group We provide dinner and child care Addressing the needs of the children who are deaf and hard of hearing and their families through collaborative learning and sharing of local resources

Setting the stage for population health
Pop. health is not just the overall health of a population it also includes the distribution of health within that population Right side of the figure indicates different determinants of health each determinant has a biological impact on the individual and population health outcomes To really impact the health of a population you need to expand services into these different domains How does the commission effect health outcomes for CYSHCN

The Commission addresses many health factors in addition to clinical care, all helping to improve the health of the CYSHCN population

Summary Discussed some of the Commission’s history
Discussed CYSHCN definition and prevalence Went over some of the innovative ways the Commission is addressing population health through collaborative partnerships Discussed the KY EHDI program and how it is working on population health through learning communities

Commission for Children with Special Health Care Needs
Judy Ann Theriot, MD, CPE Commission for Children with Special Health Care Needs

Improving Health Outcomes for Children and Youth with Special Health Care Needs through, Initiatives, Partnerships and Innovation Kentucky Primary Care.

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Presentation on theme: "Improving Health Outcomes for Children and Youth with Special Health Care Needs through, Initiatives, Partnerships and Innovation Kentucky Primary Care."— Presentation transcript:

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Improving Health Outcomes for Children and Youth with Special Health Care Needs through, Initiatives, Partnerships and Innovation Kentucky Primary Care.

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Presentation on theme: "Improving Health Outcomes for Children and Youth with Special Health Care Needs through, Initiatives, Partnerships and Innovation Kentucky Primary Care."— Presentation transcript:

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About project

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