CASE SCENARIO
My patient, W.B., is a 43-year-old man with an intellectual disability who has lived with his mother his entire life. He communicates with augmentative and alternative communication. He presents to my office with his brother, who recently took over providing support after their mother passed away. W.B.’s brother lives out of state and is unable to care for W.B. full time; he requests assistance in determining the best options for further care for W.B. How can I support W.B.’s transition into long-term care, and what is the family physician’s role in this transition?
COMMENTARY
When caring for a person with intellectual and developmental disabilities, clinicians should provide patients with options for community living, services, and supports, allowing them the opportunity to make their will and preferences known.1 With any major life change, a person centered–planning meeting should be held in which the aspirations, goals, and preferences of the person with a disability are explored with their circle of support. A circle of support includes the people who are significant and valuable to the person with a disability (eg, family, friends, clergy, professionals, experts). Such meetings are typically facilitated by an experienced professional. With the help of the person’s circle of support, the results of the meeting can then be translated into a plan for services and supports to implement the plan as closely as possible to the person’s wishes.
The standard of care is to support people with intellectual and developmental disabilities in dispersed, integrated housing with community-based supports.2 The benefits of living in small homes with family or roommates and residing within communities are well demonstrated for people with intellectual and developmental disabilities; in turn, communities benefit from the increased diversity of their members.3–5
The federal government has an established agreement with each state to provide home- and community-based services through Medicaid.6,7 The exact type of services, eligibility, and method of access all vary by state, but available resources typically include case management, residential services, personal assistance, home health care, transportation, respite, employment support, and adult day services. Access to services improves health and reduces health disparities for people with intellectual and developmental disabilities. Family physicians should familiarize themselves with referral processes to main agencies that coordinate home- and community-based services for people with intellectual and developmental disabilities in their community8 (Table 1).
TABLE 1. Role of the Primary Care Physician in Service Transitions and Community Care for Adults With Intellectual or Developmental Disabilities
| Communication and decision-making | Document communication method or refer to services to establish functional communication (speech therapy) Example toolkit: https://odpc.ucsf.edu/communications-paper Counsel on and document any supported decision-making agreements, power of attorney, legal documents; update as needed National Resource Center for Supported Decision-Making: https://supporteddecisionmaking.org Arc, Center for Future Planning: https://futureplanning.thearc.org/pages/learn/where-to-start Ensure HIPAA release forms are up to date for relevant supporters |
| Eligibility for services | Discuss availability of services and early future planning Example of basic assessment for service needs: https://odpc.ucsf.edu/clinical/patient-centered-care/assessing-for-service-and-support-needs Refer patients with intellectual or developmental disabilities to state entry point for services List of state departments for service access and entry: https://www.yai.org/sites/default/files/documents/state_by_state_list.docx Refer for neuropsychological testing as needed to document eligibility for services and intellectual or developmental disability diagnosis Refer for physical, occupational, and speech therapy as needed to further determine service needs Complete any necessary eligibility paperwork for state services, SSI or SSDI, vocational rehabilitation, paratransit, SNAP, and housing or utility subsidy programs Encourage engagement of the circle of support and a person centered–planning process in determining service needs Circles of Support: a manual for getting started: https://www.ric.org.au/assets/Uploads/circles-of-support/fc67c032b4/Circles-of-Support-Manual-2019.pdf |
| Medical summary and evaluation | Ensure comprehensive medical summary is documented for supporters and physicians assuming care, as applicable Provide a baseline examination and functional examination Document prior medications and treatments and describe why they were discontinued Provide copies of key testing results and immunizations and update if needed (eg, tuberculosis clearance, COVID-19 testing often required) Document which specialists are following the patient and why Evaluate and document clinical and functional baseline to ensure any changes are quickly identified Complete evaluation for any behavioral or functional change to identify any new medical issues Access mental and behavioral health tools that health care professionals can use to identify and monitor problem behaviors Example toolkit: https://iddtoolkit.vkcsites.org/behavioral-and-mental-health-issues Communicate directly with accepting clinician and ideally transition before service transition (if transitioning primary care) Reconcile medications thoroughly, including over-the-counter medications and supplements Update needed orders for health metric tracking Example tracking forms: https://odpc.ucsf.edu/clinical/tracking-forms Update and complete any orders for durable medical equipment |
HIPAA = Health Insurance Portability and Accountability Act; SNAP = Supplemental Nutrition Assistance Program; SSDI = Social Security Disability Insurance; SSI = Supplemental Security Income.
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