Improving the Health of Our Athletes. Matt Holder, MD, MBA President, AADMD Global Medical Advisor, Special Olympics CEO, Lee Specialty Clinic

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1 Improving the Health of Our Athletes Matt Holder, MD, MBA President, AADMD Global Medical Advisor, Special Olympics CEO, Lee Specialty Clinic

2 Affiliations Special Olympics International American Academy of Developmental Medicine and Dentistry (AADMD) Lee Specialty Clinic

3 EVERYBODY

4 DEVELOPMENTAL DISABILITIES EVERYBODY

5 DEVELOPMENTAL DISABILITIES

6 INTELLECTUAL DISABILITY DEVELOPMENTAL DISABILITIES

7 INTELLECTUAL DISABILITY AUTISM DEVELOPMENTAL DISABILITIES

8 INTELLECTUAL DISABILITY AUTISM CEREBRAL PALSY DEVELOPMENTAL DISABILITIES

9 DOWN SYNDROME INTELLECTUAL DISABILITY AUTISM CEREBRAL PALSY DEVELOPMENTAL DISABILITIES

10 DOWN SYNDROME FAS INTELLECTUAL DISABILITY AUTISM CEREBRAL PALSY DEVELOPMENTAL DISABILITIES

11 DOWN SYNDROME FAS INTELLECTUAL DISABILITY AUTISM CEREBRAL PALSY F X S DEVELOPMENTAL DISABILITIES

12 DOWN SYNDROME FAS INTELLECTUAL DISABILITY AUTISM CEREBRAL PALSY F X S DEVELOPMENTAL DISABILITIES

13 DEVELOPMENTAL DISABILITIES EVERYBODY

14 Common Terms Intellectual Disability (1 in 44) Autism (1 in 68) (26-49% of people with ID) Cerebral Palsy (1 in 323) (5% of ID) Down syndrome (1 in 691) (6% of ID) Fetal alcohol spectrum (1 in 3000) (1.5% of ID) Fragile X syndrome (1 in 4000) (1.1% of ID) Neurodevelopmental Disorders (100% of ID)

Secondary Health Consequences Intellectual

Conditions Cardiac & Pulmonary Skeletal &

15 Secondary Health Consequences Intellectual Disability Environment Genetics Cephalic & Cervical Sensory Impairment Neuromotor Dysfunction Seizure Disorder Neurodevelopmental Disorder Common Cerebrogenic Conditions Syndrome Specific Conditions Cardiac & Pulmonary Skeletal & Connective Endocrine & Metabolic Secondary Health Consequences Abnormal Behavior Gastro Intestinal

16 Untrained doctors Systemic Problems 81% of medical students and 90% of residents lack basic exposure to this population Aging population More adults than children with IDD for the first time in human history Deinstitutionalization, the social model and unprepared community health infrastructure Occurring since the 1960s

17 Payment systems Systemic Problems Medicaid nuff said 3-5% of the population, 15-25% of the cost Fragmented healthcare system Exacerbated by intellectual disability and communication difficulties Culture of low expectations The generalized set of assumptions that the possible is impossible

18 Unmet Health Needs Special Olympics Data (average age: 24) Active Dental Pain 17% Low Bone Density 20% Hearing Loss 23% Vision Impairment 27% Obesity/Overweight 70+% Other Data GERD 60% Constipation 48% Aspiration pneumonia 4 th cause of death Life expectancy ~ 60 years

19 Medically Underserved Population The federal government may designate different populations as a MUP. AMA resolution 805-i-10 supports this ADA resolution 96H-2014 supports this ACP resolution 06-S16 supports this APTA resolution supports this AAPD resolution supports this States can do this too (Feds haven t yet)

20 Lily Hypoplastic Right Heart In need of transplant No known genetic syndrome Digital abnormalities EEG changes of unknown predictive significance Removed from the transplant list Note: Permission to identify Lily and discuss her case has been given by the appropriate parent/guardian.

21 Prescription Patterns 25% more likely to get a prescription 300% more likely to continue a prescription 46% of psychotropic drugs don t have a corresponding psychiatric diagnosis 13% of anti-seizure drugs don t have a corresponding seizure diagnosis

22 Pain and Behavior Behavior Complaint Behaviors Increase $ Physician Treats Behavior Physical Problem Worsens Behaviors Decrease

23 Pain and Behavior Behavior Complaint Team Discovers Cause Team Treats Cause Behaviors Increase Physician Treats Behavior Behaviors Decrease Physical Problem Worsens Behaviors Decrease Physical Problem Better

24 Medical Causes Upper Respiratory Infection, Pharyngitis Sinusitis Otitis Media Dental Pain GERD Constipation or other Gastrointestinal issues Urinary Tract Infection Skin Lesions Seizures Sleep changes

25 Dental Problems Enamel erosion: A clue to a larger problem. Taking an Oral ph may be very helpful. Look for stair-stepping of metal fillings.

26 Medications Recent Medication Changes* *Do not assume that removal or decrease of medication is the problem. Removal or decrease may be unmasking the symptoms of the problem. Medication side effects Dystonia GI Dysphagia, GERD, Constipation Aspiration Osteoporosis Obesity

27 Anything Else Caffeinated beverages Sexual feelings Self stimulation Withdrawal (cigarettes, street drugs, alcohol)

28 Behavioral/Environmental Assessment Changes in living environment Changes in family/friends/caregivers Changes in routines Any other stressors? Sometimes evident because behaviors occur consistently in certain locations, at certain times or around certain people. Utilize the help of a Behavior Analyst to navigate these issues.

29 Psychiatric Psychiatric should be the last consideration Look for temporary conditions first and couple them therapeutic interventions and periodic assessments Anxiety and depression tend to be less common as intellectual function diminishes Collect behavioral data to determine if intervention is having desired effect Have an exit plan for medications, if possible

30 Tips for the Medical Encounter Find a doc who will listen, somebody with people skills. Provide contact information for all involved parties. Bring all available medical information to the visit. Obtain relevant consents, before the encounter if possible (Power of Attorney, Guardianship, Supported Decision Making)

31 Informed Consent Logic Self- Guardian? No Decisional Capacity? No Yes Guardian Consent Rules Yes Decisional Capacity Yes Patient Consent Rules No Emergency? Yes No Could condition develop into an emergency prior to guardianship being established? Contact family Treat patient Establish guardianship after treatment Yes No Contact family Do not treat patient Establish guardianship before treatment.

32 HISTORY Provide information about functional baseline and identify any landmark events that were associated with setbacks or improvement. Establish a neurodevelopmental diagnosis Genetic testing

33 Ideal System?

34 Ideal System? Clinical Center

35 Lee Specialty Clinic Serving exclusively patients with IDD Interdisciplinary model of care > 1200 patients from all corners of Kentucky

36 Values Interdisciplinary, coordinated patient care Professional mentorship Patient advocacy Better health outcomes Identifying underlying neurodevelopmental diagnosis Finding/confirming various diagnoses Applying appropriate treatment Reducing polypharmacy Decreasing the need for institutional care

37 Dental Services Primary Dental Care CODA Approve Residency International miniresidency program Coordination with external dental specialists

38 Medical Services Medical Program Developmental Medicine Phlebotomy Coordination with external medical specialists

39 Behavioral/Psychiatric Services Behavioral Program Psychiatry Behavior Analysis Psychology Crisis Intervention

40 Therapeutic Services Physical Therapy Occupational Therapy Speech Therapy Co-treated therapy

41 Specialty Services Specialty Service Program Neurology Audiology Podiatry Ophthalmology Nutrition Oral Pathology Working on Gynecology, Endocrinology, Dermatology We will refer and coordinate with other external specialists

42 Teaching Dental residency/fellowship (AEGD, Developmental Dentistry) Dental student rotation site Dental hygiene student rotation site Behavior analyst student practicum site Occupational therapy rotation site Nurse practitioner student practicum site Speech Therapy practicum site Medical student/resident rotation site

43 Education Systemic Changes Medical School/Residency Curriculum Continuing education of healthcare providers Medically Underserves Population Designation Governor can ask that entire state be designated as a medically underserved area for people with IDD Create a network of IDD - specialized clinics webbed with non-specialized clinics to provide training, expert consultation and inclusivity

44 Back to the Athlete Prevention Model healthy behaviors Do not use food as a reward Watch for medication side effects Brush teeth regularly Diet Follow bone density Follow vitamin D levels Question long-term medications Stay involved!

45 Thank You Matt Holder, MD, MBA

Section Objectives. Module 7 Health Care Advocacy 2/26/2018. Conditions of use. Participants will be able to:

Section Objectives. Module 7 Health Care Advocacy 2/26/2018. Conditions of use. Participants will be able to: 3/15 Module 7 Health Care Advocacy 1 Conditions of use The Education and Training Curriculum on Dementia and Intellectual and Developmental Disabilities is copyrighted by the American Academy of Developmental