How to Navigate Coronavirus Hospitalization for Your Child with Special Needs

The New York Department of Health issued new guidelines and rights for coronavirus patients with special needs on April 10.

By Jacqueline Neber April 24, 2020

Your child with intellectual or developmental disabilities has a right to have a support person stay with him in the event of coronavirus hospitalization, according to the New York Department of Health’s new coronavirus hospital visitation guidelines issued on April 10. If your child cannot advocate for himself or consent to care, two people can be designated support people for him, but only one person will be allowed with him at a given time in the hospital. That person will be the only person allowed with him during care; the DOH requires that this restriction be explained to your prior to arriving to, or upon arriving to, the hospital. Hospitals are required to permit your child a support person, and support people must follow hygiene guidelines as outlined in the DOH document and will be screened for coronavirus symptoms regularly in the hospital. Caregivers or parents ages 70 and older are not advised to be support people right now due to increased coronavirus risk.

The Self-Advocacy Association of New York State (SANYS) has prepared a Help with Hospitalization guidebook to help kids and adult children with special needs understand what coronavirus hospitalization means, help you understand your child’s hospitalization rights, and allow hospital staff to understand your child’s special needs. Download Help with Hospitalization here.

You or your child should also complete the SANYS universal Covid-19 Disability Form during quarantine so it will be ready if she needs to go to the hospital. Sections allow you to delineate how your child best communicates and whether she needs any technological help for communicating. You can describe her triggers, including any potentially dangerous behavior, and how she normally responds to medical exams, and identify modifications that will help calm her. The form also asks about your child’s living situation, her primary doctors, and whether she has a health care agent. Most importantly, the form asks you to assess your child’s capacity to consent to care. Patients who are their own guardians or have capacity to consent will fill out their own section.

Emergency room and hospital physicians, individuals with intellectual or developmental disabilities, and parent advocates worked together to design the Covid-19 Disability Form. Your care manager can help you complete the form if necessary; all care coordination organizations in New York are utilizing the form to support patients.

These new DOH guidelines apply to patients with cognitive impairments such as dementia, pediatric patients, and patients in labor and delivery. For more information on your loved one's rights and to download other documents, visit the SANYS website, and keep up with coronavirus news throughout the New York metro area so your family can adapt to this constantly-changing situation.