1. Thomas Cornwell, MD ©AAHCM

4.  Similarities ◦ Interdisciplinary team with patient/caregiver at center ◦ Secondary complications from immobility ◦ Polypharmacy ◦ Desire aging in place ◦ Caregiver support ◦ Illness can present as a change in behavior or function  Differences ◦ Older in decline, palliative care, rehabilitation ◦ Younger “House call to get them out of the home;” Benefit more from aggressive care—tend to get back to baseline; Habilitation: Services that help a person learn, keep, or improve skills and functional abilities that they may not be developing normally—maximize potential. ©AAHCM

5.  Late 1800’s-1930’s: First institutionalization; fires, disease, overcrowding, eugenics, life expectancy 18  1940’s-50’s: Disability rights organizations (WWII Vets)  1960’s: President Kennedy’s Panel on Mental Retardation, Civil Rights movement ⇒ Disabilities Rights movement, Ed Roberts father of movement (Berkley)  1970’s: 1972 world’s first Center for Independent Living; 1975 Education for All Handicapped Children Act; 1977 Lanterman Act (CA) community supports  1990’s: Americans with Disabilities Act; 1992 Olmstead Act ⇩segregation / ⇧ Integration  Today: Life expectancy approaches general population. Emphasis to keep community system robust. ©AAHCM

6.  Ability Bias: Disability is “bad” vs. a part of human diversity.  Disability isn’t a trait or a characteristic but a failure to accommodate the needs. All deserve to learn, have access, direct their lives, and make a contribution.  Developmental Disabilities: Atypical neurological development resulting in challenges in: 1) cognition, 2) sensory processing, 3) fine and gross motor skills, 4) seizure threshold, 5) behavior and mental health  Higher risk for secondary health conditions such as obesity, falls, dental disease, dysphagia, constipation; Higher rates of health problems and hospitalizations; medically underserved  Quality of life assumptions should not be used to offer or deny treatment. ©AAHCM

8.  Duchene Muscular Dystrophy/Quadriplegic: Diagnosed age 5, first seen by HCP age 13  Cardiomyopathy (EF 25%)  Respiratory Failure/Ventilator Dependent  Intermittent Pneumonia: Lukens tubes / Cipro / Bactrim at home  Depression/Anxiety  Dysphagia: G-tube feedings (replacement tube at home)  Gastroparesis ©AAHCM

13.  ∼half of adults with DD live with family caregivers, the rest have professional caregivers.  All caregivers require support ◦ Needs should be assessed regularly ◦ Consider logistical challenges with any recommendations ◦ Assist with additional services and supports ◦ Consider philanthropy (Patient Assistance Fund) ©AAHCM

14.  Office of Developmental Primary Care (UCSF Dr. Clarrisa Kripke): http://odpc.ucsf.edu. Excellent resource with numerous educational PDFs.http://odpc.ucsf.edu  Parent Training and Information Centers: www.parentcenterhub.org. Information on Parent Training Information Centers in every state funded by the Individuals with Disabilities Education Act (IDEA) www.parentcenterhub.org  State Title V Maternal and Child Health Services Block Grants ($510 million) http://mchb.hrsa.gov/programs/titlevgrants/ http://mchb.hrsa.gov/programs/titlevgrants/  Thomas.Cornwell@cadencehealth.org Thomas.Cornwell@cadencehealth.org ©AAHCM

15. Interdisciplinary Team Decision Maker Patient Advocate Translator  Group Home Supervisor  Primary Family Caregiver  Residential Support Supervisor Direct Caregivers Primary Doctor Nurse Practitioner Pharmacy Medical Specialists Dentist Mental Health Durable Medical Equipment Providers Oversight Agencies Case Coordinators  V ocational  Day Programs  Insurance  Social Service  Other