Thanks to all who responded to my request last week to assist a young man who sustained a spinal cord injury in 2005. As you may recall, he is living in a nursing home near Macon, Ga. I put out an SOS for ideas and a request for a case manager in the Georgia area who could assist the patient with learning resources that would help improve his quality of life. Thanks to social networking between alert case managers, I received several excellent ideas regarding resources that can be tapped into to assist this young man. In addition, I was able to connect with two case managers from the Georgia area through the Case Management Society of Georgia. They agreed to perform an assessment and, once done, discuss with the patient and his mother their findings and design a beneficial plan of care. It is my hope that this will be the beginning of some changes for this young man and allow him, despite his disabilities, to add quality to his life. Here are some of the comments that I received from fellow case managers:

From Barbara L. Kornblau, OT, JD:
I would contact the centers for independent living. They have a national association that can tell you where a local center is. VR should evaluate him. There may be the possibility of a lawsuit if he was at a private home that was insured or on the premises of a public facility that failed to have adequate security, for example, or any way to make it work-related ? even if he was working under the table. Plus, he should have rights under the State Olmstead Plan, which is required to provide him with services in the community. Some states pay for attendant care under the Medicaid waiver. The center for independent living should be able to hook him up. They should also contact the agency in the state that handles protection and advocacy. The protection and advocacy groups also have a national association that will tell you which agency in his state does P&A. Both P&A and the Centers for Independent Living are funded by your tax dollars, so they should be without charge.

From Karyn Scully, RN, CRRN:
I had a client who was at my facility, and his mom took him home. He was a brain injury, s/p cardiac arrest, only 20 years old. His mom hired a company to provide a companion to him for several hours per week. She specifically requested a young male to be provided and that is who they sent. When you pay for attendant care via cash, your options are endless. People respond to your requests when you pay for it with cash; money talks, especially in healthcare. This mom had the attendant play cards, go for walks around their neighborhood, and just talk guy stuff with him. Another option that could be given to the mom is to get some books on tape from the U.S. Library. They send all the needed equipment and it is free of charge to the disabled population. They even have magazines and such on tape.

From Susan Webb:
Please Google “Centers for Independent Living” and find the one nearest to Macon. There are 600 CILs across the United States that receive funding from the U.S. Department of Education, and this is exactly the type of work all are required to do. Getting people out of nursing homes and into the community in Georgia is a huge priority. There is a Supreme Court decision from 1999 called “Olmstead v. L.C.” that addressed this very thing! The Supreme Court found that Georgia routinely institutionalized people with disabilities and that this violates the Americans with Disabilities Act. As a result of that case, every state is required to adopt a plan to move people out of institutions and into the community. There are millions of people around this nation today with disabilities as significant as what you describe who are living in their own home with the help of personal assistance services.

From Ahelm:
It is so timely that I hear this. I just visited with a friend who also had a spinal cord injury at 17. He has little upper-body function except for slight right hand movement. He is in his 40s now. He lives in an apartment that is subsidized by the state and he has an electric wheelchair. He has Medicare disability but he manages his own care ? he selected the aides that come to bathe him, do house cleaning, whatever. I think he probably manages as well as anyone could, given his circumstances. So my networking suggestion would be to create support from those who have lived with and created their own life answers. One example would be to coordinate phone calls between these two and maybe their parents to share strategies and experiences. My niece also lives in this apartment, which is very nice ? she has become friends with this gentleman and they support each other. She has cerebral palsy and has less physical limitation but they do provide some social contact and support for each other.

From Gale Davis, MS:
In Virginia we have what is called the Department for Rehabilitation Services and they work with many people such as this case. The Center for Independent Living is another resource here. As social networks go, there is probably a state focal agency where they are that would be similar departments. The website is www.vocrehabga.org/2faq.html; it often involves contacting a Care Manager from the NAPGCM site, www.caremanager.org. If they don’t specialize in younger disabled adults, they would hopefully know how to direct you. I hope this is helpful. If not I hope these folks may lead you to good resources.

From Norine G. Holland, MSN, RN, CMC, FCN:
You might look at faith-based resources; does he have a religious preference? In Virginia, we have group home availability sometimes through a group called Heart Havens, supported by the United Methodist Church. I’m not sure if they are restricted to mentally handicapped or also physically handicapped persons. Are there any other groups locally such as Shriners, Masons, etc. that might take his case on? Possibly www.patientadvocate.org has an assistance program that might help him? Looking at the state of Georgia to see if they have state-sponsored vocational rehab programs available might be an option; we have the Woodrow Wilson Rehab Center here in Virginia. Possibly the spinal cord hotline would be able to help at www.spinalcord.org.

I will keep in touch with the mother and the two case managers who are working on this case. I will update all once the plan of care is decided.

Have a great week,

Anne Llewellyn, RN-BC, MS, BHSA, CCM, CRRN
Editor-in-Chief of Across My Desk, Case in Point magazine, and the Case Management Resource Guide
allewellyn@dorlandhealth.com