Disclosures UCSF School Department of Family Office of - PowerPoint PPT Presentation

Disclosures UCSF School Department of Family Office of Developmental of Medicine and Community Medicine Primary Care I have no relationships with commercial interests to disclose. Thank you to WITH and Stupski Foundations for your support. Care of the Patient with Developmental Disabilities Clarissa Kripke, MD, FAAFP Clinical Professor, Family and Community Medicine Director, Office of Developmental Primary Care 2 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support Outline  Define Developmental Disability, Demographics, and Regional Center Systems  Describe barriers to accessing healthcare  Successful community living—what is community?  Most common challenges with access that doctors can improve: Communication is the key to patient care—but how? - Informed consent—but how? Supported Decision Making! - What is a Goals of Care conversations - developmental disability? 3 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 1 | [footer text here]

Regional Center Eligibility What are Regional Centers? Regional Centers are quasi-governmental agencies which develop and fund services and supports for people with DD  Originates before age 18, expected to continue indefinitely  Substantial disability for the individual Administer California’s Entitlement to Services and Supports - Self care Lifelong services to maximize potential (not medically necessary) - - Language Every client has a service coordinator - - Learning Individual Program Plan Services and Supports determined - - through negotiation based on: assessment, goal, individual Mobility - preference, cost effectiveness Self-direction - Disparities in resources. 24% of Regional Center clients have a - Independent living - primary language other than English Economic self sufficiency - Must not supplant generic services -  Includes, intellectual disability, cerebral palsy, epilepsy, autism Maximizes the use of natural supports - 5 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 6 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support Living Situation for People with DD Other Government Agencies California 2016 Children Family Home 97%  Schools until age 22: Group Home 3%  California Children’s Services until age 21  MediCal/SSI Adults Family Home 60%  In Home Support Services  SSDI/Medicare (when age 65 or parent retires or dies) Own Home (Supported Living) 17%  Department of Vocational Rehabilitation Group Home 16% Intermediate Care Facility 5% Institution 1% Department of Developmental Services Fact Book, 14 th Ed. 7 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 2 | [footer text here]

What Is Community? Barriers to Accessing Health Care  Prior to late 1970’s most people with developmental disabilities lived in institutions  Barriers can be physical (built environment and medical  People in institutions died young of infectious disease, fire, equipment), programmatic, communication, financial, or malnutrition, neglect attitudinal  California had a program of state sponsored eugenics with  Only 3% of Primary Care practices in CA even have a forced sterilization until 1979 wheelchair accessible scale!  When we started moving people out, they were mostly  Bridging the Gap: Improving Healthcare Access for People moving into 6-person group homes with 24 hour care and with Disabilities: sheltered workshops and day programs where people worked https://www.youtube.com/watch?v=fwhT1KFBDV4 for less than minimum wage  The new CMS Home and Community Based Settings regulations redefine community in terms of the ability to direct your own live and fully participate 9 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 10 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support Improving Access to Health Care Communication Access  Communication is the foundation of patient care  Everybody communicates  Just because I don’t talk, doesn’t mean I have nothing to say!  Ask. Find a way! Presume competence  Try auditory, visual, tactile, kinesthetic  http://odpc.ucsf.edu/advocacy/advice-from-self-advocates/non- traditional-communicators  http://odpc.ucsf.edu/training/best-practices-communication  http://odpc.ucsf.edu/communications-paper 11 Presentation Title 12 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 3 | [footer text here]

Improving Access to Health Care Improving Access to Health Care Supported Decision Making Supported Decision Making  Supported Decision Making (SDM) is a paradigm for empowering people with cognitive, communication and physical disabilities to maintain their legal capacity, even if you need support to make decisions.  SDM is an alternative to conservatorship, power of attorney, or protocols for unrepresented patients which transfer decision-making to a third party  A decision is understanding the options, weighing them against each other and communicating a choice  Capacity is not fixed (people can gain or lose it)  Capacity is determined for a specific decision at a specific moment in time 13 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 14 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support Clinical Differences: Improving Access to Health Care Elders vs. People with Disabilities Goals of Care Conversations Elders People with Disabilities  The lives of people with disabilities are meaningful and valuable at Functional limitation (often but not always) = Functional limitation = stable, often healthy all stages and regardless of functional status advanced vital organ damage vital organs  Accommodations, adaptive equipment, access, inclusion and participation improve quality of life Functional decline is often a sign illness is Functional decline may not indicate terminal nearing terminal stages illness at all  Caregivers require resources and support Poorly adjusted to living with disability - need Adjusted to living with disability - function  People with functional limitations are usually much happier and supports better - may have supports in place capable than they are judged to be by others Often don’t benefit from aggressive medical Often benefit from aggressive medical care  Ability bias is pervasive and patients can internalize messages care (burden, suffering, unfortunate, tragic, bound, vegetable, heroic for simply being, childlike) Short term memory problems interfere with Short term memory usually intact and can success of habilitation and rehabilitation learn new skills, even with cognitive disability  It is terrifying to be dependent for care and support on people who do not think your life is worth living If the problem is advanced dementia, age, or If the problem is neuromuscular or mechanical, illness, enteral feeding and ventilation support enteral feeding and ventilation support is life is unlikely to extend life or improve quality sustaining and can support an active, full life- style 15 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 4 | [footer text here]

Elders Common Pitfalls Discussing Goals of Care Recover to lower baseline function Predicts terminal decline  Pity  Abandonment Functional Status  Misleading prognosis Medical events  Threat of institutionalization  Offering interventions without context  Dehumanization People with Disabilities  Devaluing the life of a person with a disability  Stealing hope Recover to previous baseline  Disrespecting autonomy *Often well meaning and intent is to convey empathy Sometimes slower process medical event Patients with Disabilities: Avoiding Unconscious Bias When Discussing medical event Goals of Care. https://www.aafp.org/afp/2017/0801/p192.pdf Time Office of Developmental Primary Care 500 Parnassus Avenue, Box 0900 Tel: 415-476-4641 | Fax: 415-476-6051 email: odpc@fcm.ucsf.edu web: http://odpc.ucsf.edu Community Living is for Everyone! 20 Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 5 | [footer text here]