shaping the future of child health through innovation...

Working in

Affiliation

Shaping The Future of Child Health Through Innovation, Impact, and Connection: The

Mailman Center VisionDaniel Armstrong, Ph.D.

Mailman Center for Child DevelopmentDepartment of Pediatrics

And Holtz Children’s Hospital

OUR VISION

Improving lives throughINNOVATION,

IMPACT, and

CONNECTION

Mailman Center Mission Statement

Within the context of interdisciplinary collaboration, cultural competence, and family centered perspectives, and using the integrated mechanisms of research, training, service, and advocacy, the mission of the Mailman Center for Child Development is to:

• Address• Develop• Identify• Integrate• Educate

Federal, State, and Local Funding for the Mailman Center (2010-2016)

0

5000

10000

15000

20000

25000

30000

2010 2011 2012 2103 2014 2015 2016

Total

Federal

State

Local & Foundation

$25,813,178

$23,868,669

$000s

$28,325,269

Funding Sources

Federal State Local Foundation

NIH-NIDDK Florida Department of Health Early Learning Coalition of Miami-Dade/Monroe

Taft Foundation

NIH-NICHD Florida Association of Free and Charitable Clinics-FDOH

The Children’s Trust Applebaum Foundation

NIH-NHLBI Florida DevelopmentalDisabilities Council, Inc.

Miami-Dade County Taplan Family Foundatoin

NIH-NIDA Florida Children’s AdvocacyCenter

Healthy Start Coalition of Miami-Dade County

Children’s Health Fund

HRSA Office of the Attorney General South Florida BehavioralNetwork

Baxter International Foundation

US Dept of Agriculture Florida Alliance for Assistive Services and Technology (FAAST)

American Speech-Language Hearing Association

US Dept of Education Florida Dept of Education Miami Foundation

Agency for Intellectual & Developmental Disabilities

Mailman Center Directors

Interdisciplinary Collaborative Leaders

Program Infrastructure Directors

Debbie, CPT, Early Steps, Pedi Mobile Van Directors

Interdisciplinary Collaboratives

Positive BehaviorND Intervention

ND DiscoveryCommunity Wellness

LIfespan

Center Function & Infrastructure

TrainingResearch

Clinical ServiceCommunity Engagement

Center-Wide Initiatives &

Strategic Plan Oversight

UCEDDLENDCMS

Grants, Demonstration

Projects,Clinical Services

Mailman Advisory Council

Focus on Program Impact: Engine of Excellence Focus on Strategic Impact: Improving Lives through Education, Research & Services

Focus

Responsibilities

Focus

Responsibilities

AdviceImproving Lives Through Innovation, Impact, and

Connection

Vision

Mission Implementation Impact

Individual Faculty & Staff Development

Community Wellness IPC

Successes Challenges Plans

Community, student-faculty, mentoring connections

Funding limitation for new ideas Formal Collaboration with WIC

Emerging research projects- Fit-2-Play with IDD

Limited research support NIH-PA-16-169- Factors in Infancy and Early Childhood that influence obesity development in pregnancy

Interdisciplinary, Interdepartmental, and Community-based Collaboration

Inconsistency in participation Support graduate student projects on perinatal health

Move into “big data”

Lifespan IPC

Successes Challenges Plans for the Future

CHAMP Literacy skills enrichment program (Dr. Chandar, pednephrology)

Consistency of involvement Present survey study, January 2017

MED-PEDS Service Expansion with Dr. Imm, and Collaboration with FL HATS

Scheduling Expansion of transition initiatives to include parents

Expansion of “conditions” and interdisciplinary collaboration

Determining priorities Transitioning Board Concept for training and service model

Promoting Positive Behavior IPC


Convened behavioral health provider meeting (East Little Havana)

Continued member engagement Expansion of work in East Little Havana

Developed training innovationteam and trauma innovation team

Increasing synergy

Mailman Innovations and ImpactConference

Success with grant awards

New program with PCIT, Linda Ray Center, and Dependency Court

Increased behavioral health screenings across East Little Havana

Submitted 5 grants, 1 awarded

Neurodevelopmental Discovery IPC


New IPC with Dan Messinger as Co-Lead

Managing distance between campuses

Increased use of telehealth facilities

Expanded collaborations across UM Matching diverse interests for collaboration

Grants submitted for Zika, hearing research

Prioritizing Zika, Autism, Hearing as research areas

Neurodevelopmental Intervention Science IPC


Expanded IPC in neurodevelopmental intervention

Coordination Community-based training to improve evidence-based literacy

Participated in interdisciplinarytraining event for allied health professionals

Determining Priorities Increased collaboration on grant applications

Initiated collection of BMI data for 3 year olds

Access to early intervention records Integration of records across early intervention programs

With Debbie School, Coral Gables-submit NSF grant

Cross-IPC Initiatives

• Telehealth• Research brown-bags and mentoring• Restructuring of clinical areas of the Center and Debbie School• Renovation (Next- Lobbies of Mailman & Debbie, Innovation Center)• Family Navigator Program• Emerging Transformational Leadership Program• Self-Advocate Leadership Program (with DD Programs for State Impact)• Disability Fellowship-Integration with the Office of Diversity and

Multicultural Affairs

Open Discussion

Challenges for Child Health and Children with Special Health Care Needs • Developmental Disability Services

• Genetics-Funding for state genetics centers• Newborn Screening panels in place for >30 conditions that have

treatment available Expansion to include acute leukodystrophy• Screening tests are available for many others, but treatment is not

available, so newborn screening and early diagnosis is not available• Laboratories for biochemical and molecular confirmatory testing are

geographically limited and generally not sustainable based on fee revenue alone

• National shortage of genetic counselors- poorly compensated and no consistent funding source

• Oral Health- Added Dina Varon, DDS to Mailman Faculty • Pediatric dental care (preventive and restorative) severely limited,

especially for children with developmental disabilities• Limited number of trained dentists, dental hygienists for DD• Facilities with safe sedation capacity limited and costly when available

Challenges for Child Health and Children with Special Health Care Needs • Prevention with intention often missing

• Elevated mortality and morbidity in the first year of life in minority populations- The Jasmine Project

• Child abuse (and child abuse prevention)• Extreme poverty• Domestic violence• Juvenile justice involvement• Inadequate or inappropriate services in early identification/intervention

Challenges for Child Health and Children with Special Health Care Needs • Behavioral and Developmental Services-PCIT access is one

innovative approach• Nationwide, more than 12M children have a diagnosable

behavioral/emotional health condition• There are less than 4000 behavioral/mental health professionals with specific

training and expertise in child behavioral/emotional health in the US (doctoral and clinical specialists)

• Caseload of 3000/provider• This does not include children with at risk for behavioral health conditions or

those with behavioral/emotional challenges secondary to other chronic conditions

Challenges for Child Health and Children with Special Health Care Needs

• Developmental Disability Services• Therapy Services- Physical Therapy, Occupational Therapy, Speech Pathology &

Speech Therapy• Continued downward pressure on number of sessions approved for funding• Shortages of therapists, particularly bilingual/multi-lingual speech pathologists and speech

therapists- Mailman has hired bilingual speech pathologists• Infrastructure costs (e.g., space and equipment) far exceed revenue margin for capital

investment• Physical and Occupational therapy require large (e.g., 2400 sq ft) treatment centers – Pilot physical

therapy program for hemophilia in BCRI with Dept of Physical Therapy• Gait Centers with biometric capacity represent state of the art, but limited availability

• Pediatric Ophthalmology and Audiology Services- Collaboration with the Dept of Otolaryngology and Barton G. Center (audiology, speech, & social work)

• Glasses, hearing aids may have limited/no third party coverage• Access to Pediatric Ophthalmology limited (providers and funding)-Zika Collaboration


• Developmental Disability Services• Nutrition and Exercise Physiology

• Qualified nutritionists for children limited, particularly for children with developmental disabilities

• Severe shortage of bilingual nutritionists and nutrition programs

• Comprehensive integrated nutritional programs for children with intestinal failure, transplant, post-CNS radiation therapy, etc. direly lacking

• Interdisciplinary feeding programs for children with developmental disabilities severely lacking (one in Baltimore, one in Atlanta, one starting in Ft. Lauderdale)


• Continuity of Care across the Lifespan (also called Transition)• Adult care network poorly prepared- Core efforts with Med-Peds & Dr. Imm

• Until 15-20 years ago, most children with severe special health conditions did not survive into adulthood; now most do

• Adult health problems resulting from childhood conditions are not like adult health conditions commonly seen

• Significant research on childhood chronic or developmental conditions/ very little research on adult consequences of childhood chronic conditions-translation is a problem

• Funding models, hospital care restrictions artificially restrict smooth continuity of care

• Hospitals typically not organized for individuals with intellectual or developmental disabilities

• Trained staff• Environmental structure to permit independence in the hospital setting• Limited access to assistive technology- augmentative communication devices, etc.

Resource Challenges

• Funding models for all of health care are changing• Reimbursement for providers and hospitals

• Nationwide• Affordable Care Act & inconsistent adoption of Medicaid Expansion-Repeal and Replace?• Annual pressures on budget for NIH, CDC, Title V programs

• In Florida• Medicaid (state administered) to Managed Medicaid/ Block Grants• DRG payments for hospital stays as opposed to daily rates• Uncertain future for Children’s Medical Services (State Title V)

• Funding for specialty programs with comprehensive, wrap-around chronic/severe care• Standards and review process for child specialty programs (e.g., cardiac, neonatal,

cancer)• Historical long waitlist for Medicaid Waiver

Driving Principles for Change• Innovation- doing things differently,

leading rather than responding to market and policy change

• Impact- making a difference not only at a child/family level, but at community and population levels

• Connections- doing things together with both historic partners andcollaborators not previously considered

Opportunities

• Address health disparities at intersection with disability (Major Mailman Center Goal)- East Little Havana and Overtown Initiatives Are Underway

• Build capacity for care for children and adults from diverse backgrounds• Promote disability as a diversity and potential disparity issue• Conduct health services research to assure that disparities due to care

delivery models are eliminated• Develop pipeline of future professionals with both developmental disablities

and disparities training• Advocate for public policies that reduce barriers to non-disparate outcomes

Opportunities• Build service capacity in communities

• Adopt communities as partners for training, research, and implementation of best practice care

• Establish data collection system in communities to use as measures of impact and outcomes for innovative programs

• Establish infrastructure for translation of Center-developed best practices to community setting

• Use technology to provide access to information, skill training for professionals, patients and family members, and support communities

Opportunities

• Develop “research-mentality” around service programs• Test what we are doing to see if it makes a difference• Use clinical observations to drive innovative approaches to care• Develop collaborations that drive translational discoveries• Create mechanisms for “team science” and “team care”• Create model for evidence-based “precision-medicine” for children with

chronic or developmental conditions

Opportunities• Promote innovative approaches to

“unmodifiable” social determinants of health

• Experiment with new systems of care that enhance access and produce better outcomes

• Design ways to optimize scarce professional resources- Telehealth Initiative

• Assist communities in determining local solutions to increased green space, opportunities for physical activity, access to nutritional alternatives- FIT-2-Play

• Engage community programs, leaders, and policy makers to reduce adverse impact of social determinants of health

Next Steps

• Clarify IPC goals and implementation plans, coordinate across IPCs• Improve efficiency and efficacy of clinical programs• Improve collaboration and integration with other programs at UM for core

services • Child psychiatry, neurology, ENT-audiology & speech, physical therapy, nursing,

nutrition, behavioral science• Develop strong translational relationships with other Centers and Institutes

(e.g., Sylvester, Interdisciplinary Stem Cell Institute, UM Innovations, Diabetes Research Institute, Miami Project, CTSI) and disciplines outside Mailman/Pediatrics (e.g., radiology, genomics, pharmacology, cell biology, biochemistry, physiology; public health, law, business, ethics, political science, communications, education) and engage faculty in these areas with IPCs

Next Steps

• Expand core service programs (e.g., Early Steps, Child Protection Team, Debbie School) to serve as platforms for innovative, high-yield research

• Develop strategic and synergistic research plan within and across IPCs that is inclusive of all levels of translational research.

• Design and implement new models of training that can be applied outside traditional learning settings

• Training for professionals, parents, and self-advocates• Training to expand capacity in both domestic and

international communities• Intentionally and effectively translate Center best

practice and research findings into community settings as quickly as possible.

Bottom Lines

• The world of developmental disabilities, children with special health care needs, and child health in general has changed and will continue to change. The Mailman Center can be reactive to this change, or

• The Mailman Center can be a leader in using this change to improve lives of children, their families, and the communities they live in

Final Thought-It is really quite simple

•Embrace Innovation•Strive for Impact•Achieve success through Connections.

Thank you for embracing the vision with thoughtfulness, commitment, and passion!

shaping the future of child health through innovation...

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