What is Disability Expertise Anyway?

“A lot of medical professionals just see me as a failure. People at ICS don’t. ICS should be the model for how care for people with severe disabilities is delivered.” ICS member Barbara Bobbi Linn.

ICS was created to fill a gap in care in New York City at a time when adults with physical disabilities couldn’t get the support and services they needed to live outside of institutions. Over two decades we have helped thousands of men and women to live safely in their communities with their often very complex conditions, by offering them disability-expert care management.
Some of this is about having staff trained and certified to specialize in a specific condition, like Multiple Sclerosis – but a lot of it is really about paying attention to each member’s very specific needs, as ICS member Jose Hernandez describes in this video.

Disability-expert care management is focused on the individual. Its goal is to determine which services and supports will help the individual achieve their maximum functional ability, protect their health, and allow them to have the best possible quality of life. It takes into account the person’s independence and autonomy, and what they need to participate in family, work, school, and community life.

Importantly, disability-expert care management is dynamic rather than static, so that as a person’s condition changes, appropriate adjustments are made in a timely way. It uses member-specific data to create sensible care plans and efficiently allocate resources. Disability-expert care management empowers the person with the disability to make decisions regarding their health and wellbeing.

How do we know it works?

Well, first, our members provide us with constant feedback. They call their care managers – they also call our president, COO and other members of our leadership team. They come to the member centers at ICS offices and talk to us. They write emails, send letters, and attend member council meetings. Their family members call us too. In addition, we go out of our way to encourage members to file grievances when they have a problem because that helps us spot issues and address them.

Second, New York State gathers a lot of information about our members, their health and their opinions. We’re very proud of the fact that, according to the New York Department of Health, 87 percent of ICS members rate their care managers highly!

But while we love hearing what our members think, it’s also very important to us to be able to see and quantify the results of disability-expert care management. So here are a few more ways that we know that what we do works:

  • While the vast majority – 87 percent – of our members are unable to walk on their own, just 4 percent are stuck in bed.
  • Our members’ limited mobility also means that many – about 40 percent – are at high risk for dangerous, painful pressure wounds, yet fewer than 2 percent develop a new wound because of an organization-wide focus on prevention.
  • Similarly, the hospitalization rate for ICS members is strikingly low, despite the fact that the people we serve have very complicated health pictures; in fact, the average member has between five and 12 different diagnoses.

The bottom line is that ICS chose to serve people whose disabilities and health conditions, by definition, mean that they live with a lot of risk. To do that, we developed a deep well of knowledge and comprehensive tools to help us identify and intervene when a member is at risk in some area of their health or functional ability. We created effective processes and trained our staff to ensure that each member’s care plan is designed to meet his or her specific needs – because we know that while some people with disabilities do well with just a little help, many others need intensive, multi-faceted services and live with rapidly changing threats to their health and well-being.

So at ICS, “disability-expert,” might best be defined as the having the knowledge, tools, training and skills to determine what people with physical disabilities actually need to live their lives and remain as healthy as possible – and to ensure that those needs are consistently met.

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