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Can this resident ever move closer to home?

April 9, 2012
by Kathleen Mears
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On a motorcycle trip through Ohio more than two years ago, a crash left John (pseudonym) traumatically brain injured and partially paralyzed. He was put in an Ohio nursing facility for care, but he wanted to go back to his Southern home—a 10-hour drive away.

John lived at this nursing home when I arrived two years ago. He was soon after moved to another facility for more than a year. Then, this past December, he returned to see if he could improve his health situation and go back home.

Every day this 28-year-old father of two is encouraged to feed himself and do all he can so he can go home.

But John's behaviors and displays of anger make caring for him difficult. The nurses and aides deal with his outbursts and visibly keep their composure.

John constantly asks when he is going home. The staff tells him the facility is “working on it,” which does not seem to reassure him.

His mother calls, but she does not speak to him. In fairness, he has difficulty speaking and can be hard to understand.

Sometimes I wonder how he feels about his family and if he realizes how long ago he was injured. If he does have that understanding, his thoughts must be a maze.

And there are indeed barriers to John returning home. His physical condition and behaviors would make it necessary for him to live in a nursing facility in the South. There would likely have to be a Medicaid nursing home slot available in his home state.

His physical condition and tolerance would make a medical flight his best way to travel. Since the cost would be prohibitive, financial assistance would have to be made available.

With all of these factors, and despite the best intentions of the facility, I question if John will ever get to go home.

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To be brutally frank,it would be very difficult to find a place willing to take him. When you combine the fact that he requires extensive to dependant care,has an anger management problem,and the fact that medicaid re-imbursement is low for the amount of care he will need,placement is pretty unlikely. But I am not telling you anything you don't already know. Just some cold hard realities of our system. In a case management standup meeting they are going to say,"This guy is a trainwreck that they are trying to unload on us,and we don't want him." Sad but true,and frighteningly this situation could happen to any of us. My prayers for him and his family.

Depending on his payor source , they must be able to aleast find a facility closer to his home and family. There are specialized facilites which are for TBI clients. Also have homecare in the home funded by payor source might also be a option. SS benefits would surely be available for this client and could assist in his care as well.

Kudos to you for your positive attitude. More like you are needed in this word world, and especially in Long Term Care!

Has anyone bothered to tell this young man that his behaviors are one of the things that is keeping him in long term care? Believe it or not, I have personally known three such residents who had no idea their behavior was holding them back until I explained it to them; they did change their behavior and returned home. People can change, nursing home residents are no different in this regard. Perhaps his family can care for him. John's best case scenario would if a family member (loving wife, in-law, other family member) were a nurse, or even an administrator. If one of my family members were in this situation and I became aware of it, I would help, and I think many would do the same.

Motorcycle riders love their freedom, which is what riding a bike is all about. He may feel as though he is in prison. While there is no promise that changing behaviors will allow every resident to return home, every resident does have the right to know exactly what is holding them back from returning home.

There are now motorcycles for wheelchair dependent individuals. John may need some hope. Everyone needs hope.

I'm in Massachusetts, where the Medicaid options are different BUT there is REAL push in "the system" for what is called 'the money follows the person.' It is a civil rights issue, to be able to live in the least restrictive environment. He is an adult, and unless he is LEGALLY deemed to be incompetent, he has the right to try and take risks. I would suggest John talk with the ombudsman at your facility to see if he can connect with the local agency that is involved in this program. It might be the AAA (area agency on agency) or a disability rights group. I would think he is eligible for SocialSecurity, perhaps Medicare (if disabled x 2 yrs), and Medicaid. There is funding specifically aimed at helping people who could live in the community with supports (sometimes extensive and expensive supports, housing adaptation, etc) to get OUT of the nursing home. It is likely that your facility staff are not working too hard to help him get "home", as there is not much benefit for the facility to do that. It may be that moving to the local community first, around this nursing home, so that he can show that he can manage, might be a more realistic goal - esp. if your state has more programs/services available than his 'home' state. The other piece is to know more about his supports in his home state - is there anyone there who can/will advocate/work the system there to help him? I would say he might be able to return home (or at least, live in the community and not a SNF) but it is an uphill climb and he will need persistence, patience, a lot of work, and a bit of luck. TBI patients are not known for persistence and patience, but he may be able to manage his behaviors more effectively if he has more realistic hopes of achieving short term goals in a plan to move out of the SNF, instead of it being such a vague goal with no action plan. Sorry this is long. Hope it helps.

I am the 'anonymous' who commented earlier today on resources for going home. As a disabled adult, the resident you mentioned may qualify for these initiatives. The web site listed at the bottom of this press release might help figure out what specific agencies in your state are involved. Good luck.

A Statement from Secretary Sebelius on the Administration for Community Living

All Americans – including people with disabilities and seniors – should be able to live at home with the supports they need, participating in communities that value their contributions – rather than in nursing homes or other institutions.

The Obama administration and my department have long been committed to promoting community living and finding new mechanisms to help ensure that the supports people with disabilities and seniors need to live in the community are accessible.

Today, with the creation of the new Administration for Community Living (ACL), we are reinforcing this commitment by bringing together key HHS organizations and offices dedicated to improving the lives of those with functional needs into one coordinated, focused and stronger entity.

The Administration for Community Living will bring together the Administration on Aging, the Office on Disability and the Administration on Developmental Disabilities into a single agency that supports both cross-cutting initiatives and efforts focused on the unique needs of individual groups, such as children with developmental disabilities or seniors with dementia. This new agency will work on increasing access to community supports and achieving full community participation for people with disabilities and seniors.

The Administration on Community Living will seek to enhance and improve the broad range of supports that individuals may need to live with respect and dignity as full members of their communities. These support needs go well beyond health care and include the availability of appropriate housing, employment, education, meaningful relationships and social participation.

Building on President Obama’s Year of Community Living, the ACL will pursue improved opportunities for older Americans and people with disabilities to enjoy the fullest inclusion in the life of our nation.

For more information, please visit http://hhs.gov/acl

Contact: HHS Press Office

(202) 690-6343

I really do appreciate all that you have offered in your comments on my blog. John (pseudonym) is a REAL person and this is a real situation. I do not know all the facts because residents are not allowed to know. So I do wonder how much involvement his family has had in all of this.

To many facilities John is a train wreck. I'm not sure that telling him behavior improvement would help him get out of here would work. He has a lot of anger and as a young man it is quite difficult for him. If he could just find an outlet for that anger, his behavior might improve.

John definitely needs hope. All of us certainly do. But hope is very dangerous because it gives you a dream outside yourself. John needs to know that he has to put work into his goal of going home.

But then again he might be able to find a volunteer who would be willing to work with him and make his goal more reasonable. I believe anyone can change given enough motivation.

Thanks again for your resources and thoughts.

Kathleen Mears

www.ltlmagazine.com/blog/kathleen-mears

Kathleen Mears has been a nursing home resident in Ohio for 20 years. She is an incomplete...