As the pandemic has worsened, a number of adults with disabilities and their families have been concerned that 1) health care providers could deny treatment such as ventilators to people with significant disabilities and medical histories, and 2) concerned that in the current climate of zero visitors in hospitals for adults, that someone who is nonverbal and/or developmentally delayed could be hospitalized without the comfort and communication provided by their parent or other primary caregiver.
These tools can help you prepare to cope with ER visits and hospitalizations calmly and effectively:
- Print 2 copies of the following documentation and have easily accessible:
- Notice of My Healthcare Rights
- APPLYING HHS’S GUIDANCE FOR STATES AND HEALTH CARE PROVIDERS ON AVOIDING DISABILITY-BASED DISCRIMINATION IN TREATMENT RATIONING (April 2, 2020)
- Center for Dignity in Health Care Fact Sheet
- OCR BULLETIN: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19) (March 28, 2020)
- DREDF Preventing Discrimination in the Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis of Disability – specific reference to support person staying is at end of page 10, beginning of page 11
- Be confident
- Rather than ask if you are allowed to accompany your loved one, calmly let hospital staff know that your loved one has an Intellectual Disability and you will be staying with them as their support person per the Americans with Disabilities Act (be kind but direct)
- Give the above mentioned documentation to hospital staff (keep one copy for yourself)
- If you are told that you cannot stay with your loved one, ask to speak to a Patient Advocate immediately
- Reach out for support
- If you find yourself in an undesirable situation, please contact us. We have many contacts in the disability community who may be able to help!
DSI staff are working from home due to current stay-at-home restrictions but you are welcome to contact Stephanie Garner, DSI Program Coordinator, at 317-496-7851 if you need any help or assistance.
