When Routine Care Isn’t Routine: Disability Expertise in the Age of Coronavirus

As the Covid-19 crisis deepens, our members, whose lives are already complicated by their disabilities and chronic health conditions, face many additional challenges. Our staff are busy making sure that our members get essential supplies, medical care and social services, and arranging alternative support when members’ longstanding homecare arrangements fall apart because of the virus.

Helping Members Avoid ERs and Hospital Stays

For most people with a disability, going into a hospital right now would be catastrophic, yet that’s typically what they are advised to do when they run into a problem. Much of our work right now involves helping our members navigate the challenges they are experiencing because of the Covid-19 crisis without having to go to an emergency room.

Home care is a particular challenge for our highest risk members – those who need skilled assistance at home every day in order to live their lives. That’s because many people with disabilities need help that regular home care aides are not allowed to provide under New York State law. Some examples of this include regularly changing or cleaning a catheter so the person doesn’t get infections, operating a ventilator so the person can breathe, suctioning a tracheostomy or directly administering insulin or other medications.

With home care agency aides prohibited from doing these and similarly skilled tasks, many people with disabilities use New York State’s Consumer Directed Care Program, which allows them to hire, train and supervise their own Medicaid-paid aides to meet their specific needs for skilled care. The Consumer Directed Care Program was created with input from people with disabilities in order to make it possible for them to live independently in the community.

Since the start of the Covid-19 crisis, several ICS members who use Consumer Directed Care have lost their Consumer Directed aides to the coronavirus. A traditional response in this situation might be to call 911 or go to a hospital emergency room, something that would be dangerous for these high-risk individuals during normal times and that would be potentially deadly during this infectious health crisis. These members turned to ICS for help.

Since a traditional home care agency cannot fill the need for skilled services under New York State law, we have been arranging for certified home health agencies (CHHAs) to fill these high-risk members’ needs, allowing them to remain safely at home and away from institutional care – which would be a particularly dangerous alternative for these vulnerable individuals. CHHAs are authorized by New York State to provide intermittent health care and support services for people who need skilled assistance. Making these arrangements requires an enormous amount of individualized care coordination and a deep understanding of consumer directed care, CHHA services and the needs of our members with disabilities.

When “routine care” isn’t routine

We are also hearing from members who normally get their catheters changed by their urologist each month, but who are now having problems because these appointments, which are considered “routine,” have been cancelled due to the Covid-19 crisis. While the appointments may be routine, not being able to have their catheters changed is anything but – it’s a situation primed to create emergencies for these members, as dangerous infections are the predictable result. Our work here has been to find physicians who can perform the needed services outside of emergency room settings.

Transitioning home from the hospital

For ICS members are hospitalized right now for any reason, we are working with the hospitals to get them discharged and help them return home as quickly and safely as possible. A transition from hospital to home for a person with a physical disability is complicated and requires a great deal of coordination, including securing equipment and aide services, making sure that needed supplies are in place, that prescriptions are filled and delivered, and that the member has food and any other essentials.

Making sure that our members with disabilities are able to remain at home with the services they need to stay well not only saves the health care system money but during this time of extreme demand, keeping these very vulnerable individuals home saves valuable resources and protects lives.

Attending to our members’ mobility needs

The great majority – 87 percent – of ICS members are unable to walk without assistance, yet just 4 percent of our members are bedbound thanks to our expert, highly-customized wheelchair and complex rehab services.

When a person with a disability has no mobility equipment available that allows them to get out of bed it is not only disruptive, it affects both their mental and their physical health. A person stuck in bed is at very high risk for depression, dangerous pressure wounds, and other harmful conditions.

To alleviate this, the ICS On A Roll repair staff are doing everything possible to ensure that urgent repairs are made to members’ wheelchairs and other mobility equipment. For these members, we screen to determine the risk of exposure to the virus if a technician goes to the home and, where possible, arrange for the wheelchair or other equipment to be picked up for repair while practicing social distancing by staying six feet away from any person in the home.

The ICS way

For 20 years, ICS has supported the health and independence of New Yorkers with disabilities –

in good times and bad.  I’m proud that today we are making a tremendous difference in the lives of our members and, I am sure, saving lives by keeping them safely at home while helping them plan for this extended period of social distancing.

This, the most widespread infectious health crisis any of us have faced in our lifetime, demonstrates how essential it is to have disability-expert care management available for those who need it. I have never been more proud of the ICS staff. Working under difficult conditions, worried about their own loved ones, and many of them caring for children or elders while working at home, they nevertheless rise to the occasion each day.