Ask Mike - Finding care for a patient that needs 24 hour nursing care with ventilator

Dear Seeking LTC for 24 hours

Thanks very much for writing. Your question is straightforward. You want to know how to find assistance for a person using a ventilator and that needs "24 hour nursing care".

There are a couple of different levels to the question you pose. The first is the issue of whether adequate programmatic support is readily available to support folks with the most significant levels of functional disability. A deeper level raises the long standing and fierce debate over the issues of 24 hour coverage and "nursing care".

The PAS Center website provides basic information about the kinds of services available in your state. It also provides contact information and website addresses of pertinent, major state agencies so you can make direct contact and follow up with the appropriate state officials. On our website go to State Information. Next, scroll down to the heading, Contact Info and Descriptions for Medicaid Waivers. Next, click on your "State" on the USA map. Next, scroll down to look for one or more programs that could possibly meet the need and then use the contact information to ask more specific questions.

The problem is that many states have programs with limited services and/or limited hours of service (service caps). It is legal according to Medicaid law for states to do this. People with the most significant functional needs face this issue all the time. Programs do not offer enough service coverage and so folks are faced with the nursing home or other institution. Under the Americans with Disabilities Act (ADA), this kind of scenario is supposed to be illegal. It is a big problem that Medicaid law is not congruent with the ADA. If it looks like you may be facing a problem similar to those outlined here, you should seek advocacy assistance. From the same "State Information" page mentioned above, click on Agencies Related to PAS and then your "State". Next, scroll down to "Protection and Advocacy Agency". Use the contact information to tell your story. They can assist you from there.

Best of luck!

Mike