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HCM for Special Populations:

Younger Adults

Thomas Cornwell, MD

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No financial disclosures

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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.

Younger vs. Older Patients

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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.

Brief History of Developmental Disabilities in the United States

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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.

Overview

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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

History

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∼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)

Supporting Caregivers

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Office of Developmental Primary Care (UCSF Dr. Clarrisa Kripke): http://odpc.ucsf.edu. Excellent resource with numerous educational PDFs.

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)

State Title V Maternal and Child Health Services Block Grants ($510 million) http://mchb.hrsa.gov/programs/titlevgrants/

Thomas.Cornwell@cadencehealth.org

Resources

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