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April 15, 2020 Important Information from Self-Advocacy Association of New York State (SANYS) Director Arnold Ackerley

Self-Advocates and Parent Advocates had a recent victory advocating for people with intellectual and developmental disabilities (I/DD) to be allowed to have a support person with them if they are admitted into the hospital. Thank you to all the advocates who worked so hard on this, and to the New York State Office for People with Developmental Disabilities (OPWDD) and the New York State Department of Health (DOH) for taking action. 

SANYS worked together with professionals at SWAN (Statewide Advocacy Network) on these tools if a trip to the hospital is necessary:

The information in these documents should help self-advocates, family members, staff and others communicate the rights of a person with I/DD should they need to go to the hospital.  

“Help with COVID-19 Hospitalization” is a nine-page packet and “Help with Hospitalization – Easy Read” is an easy-to-read summary of what is in that packet. Within the packet is also a COVID-19 disability form created by SUNY Stony Brook which can be filled out in advance to help people have good information prepared, in the event that they enter a hospital.  

We are want to be clear that these are tools we are offering as help to people and they are not required for use.

We recommend that self-advocates work with their circle of support and/or teams to determine if support in the hospital will be essential or not. Everyone should recognize that this is specifically about a right to essential support and there are people with I/DD that may not need essential support in the hospital. As always, we are all different and we want to recognize that difference and be responsible in how we exercise our rights.    

Additionally, DOH has issued guidance to hospitals, clarifying the right of people with I/DD to have essential support in hospital.  That guidance can be found here: COVID-19 Updated Guidance for Hospital Operators Regarding Visitation

We would like to thank OPWDD and DOH for issuing the above guidance. We would also like to acknowledge the work done by SUNY Stonybrook and professionals at SWAN.

People Inc. is a proud supporter of the Self-Advocacy Association of New York State (SANYS).

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