18 replies to this topic

[Advocatewheeler]

I am advocating for someone in his early 20's who is a C-5 complete, presenting higher due to contractures. (I am C7 incomplete)
He is in a NJ hospital acute care (community hospital), after having a nightmare of issues getting care. He was involved in motorcycle accident, two years ago, had surgery and rehab at Kessler. Then home,for a couple of days. Then sent to ER of local hospital for infection. He coded, sent to the ICU for 9 months! He developed stage IV bedsores, severe contractures, sepsis, mrsa, and became malnourished, etc under their care. True neglect. I was able to advocate to get him to a LTAC wound care in PA. He spent 15 month- then shipped back to NJ. He went to nursing home, and lots of problems with new pressure sores on his heels. He is on his back- unable to sit in wheelchair. Kessler won't take him back until he is able to sit up and participate in 3 hours of rehab a day. I found it near impossible to find a nursing home who would be able to do wound care and accept him at his age. He is also angry and not always his own best advocate.

Parents are divorced (and dysfunctional) but mom wants to bring him home with round the clock care paid for by Medicaid, Medicare, and his SSDI checks. I found he could apply for a CRPD Medicaid waiver to get up to 16 hours a day of services at home. Problem: His grandmother owns the house where mom lives with two preschoolers. (Mother pays rent- grandmother landlord.) Grandmom told mom she will not permit her grandson to live at her house because he is quadraplegic. Mom and grandmother have long history of fighting. Father has substance abuse and care issues and cannot care for him. Only options nursing home if not home.

He is in this acute care hospital nightmare situation and they want to transfer him out in next week or two.Grandmother also told mom she would evict her if she brought home her son, would raise the rent, would put the house on sale- etc. Told her she has a right to dictate who lives there. She will not allow for any ramps to be put up (ranch home-accessible to some degree but needs ramp outside.) I explained he is unable to get out of bed and all ADL's will be in bed by homecare and mom. Does this young quad have any legal rights to go home (mom and dad POA but he is own guardian)? Can the landlord grandmother prevent the mom from bringing him home (sole caretaker with aids if he is home).

[allis53ca]

do not waste time and rersources trying to gety him home where he is obviously not wanted, and yes, she can keep him from coming home to her house...have you tried an assistive living ?

[gordonr]

Advocate,

I agree with Allis.

If ever there was a case for institutional treatment, this is it.

The problem is getting him the care he needs to heal him. If he is placed in a home where his needs are ignored, he is just going to die.

On the other hand, if he can get good long term care, he can eventually get better, and then perhaps move into an assisted setting.

Kudos for getting involved with his advocacy

Best Regards,

Gordon

[Advocatewheeler]

gordonr, on Nov 29 2009, 08:04 PM, said:

Advocate,

I agree with Allis.If ever there was a case for institutional treatment, this is it. The problem is getting him the care he needs to heal him. If he is placed in a home where his needs are ignored, he is just going to die. On the other hand, if he can get good long term care, he can eventually get better, and then perhaps move into an assisted setting. Kudos for getting involved with his advocacy

Best Regards,
Gordon

Hi Allis and Gordon:

Thanks so much. His grandmother does not want him home but she owns the house, does not live there. The mother lives there with her three daughters (two preschool and one 22). The problem is he has been going from hospital to LTAC to nursing home for over two years, and just got more infections. The local nursing homes told me he is too young for their care, and they did not have the staff to care for his stage IV wounds. So finding a nursing home to take him so far, has not happened. I believe his mother along with Medicaid Waiver of 16 hours of daily care would be the best thing for him. At least at home, his wound could heal "if" they take good care of him. Hospitals and nursing homes have so many infections. He developed the stage IV wounds, sepsis, mrsa, while he was in the ICU for 9months on his back.

Once his wounds are healed and able to sit in a chair and do exercises, he can be fitted for a powerchair.If he is back in a nursing home (last one last two weeks), then he will be stuck with people who are three times his age, and he will be in a bed as he cannot sit up due to the pressure sores. Also, they will keep sending him to hospitals from the nursing home, continuing his back and forth trips. I was hoping there would be a way out. But the family has to agree to work together to get him home. I just sent a note to a local disability rights NJ organization to ask if they have ideas.

Ideally, he would be able to be cared for in an assisted living type of facility. But not sure how we are going to get him there or where this would be. I contacted Cheshire Home in NJ. They looked great- focused on younger people with SCI. But he did not qualify because he was not able to be independent in a chair. His stage IV wounds have not healed over almost two years time, and new ones occurring due to the time in bed. I looked up some info about tenants rights and this may be helpful- .http://www.state.nj.us/dca/codes/lt/pdf/t_i_r.pdf

I am still hoping he can go home as he told me he wants to do more than anything. If I fail, at least I tried to help him. Thank you!

[Tetracyclone]

Is there any possibility of the Mom moving her family into another apartment?

[Advocatewheeler]

Pwuff, on Nov 30 2009, 12:12 AM, said:

Is there any possibility of the Mom moving her family into another apartment?

That is a great idea and we have been talking about this. His mom said she was looking to find something accessible. I guess many of the apartments for rent in her area of NJ are either townhouse style or double and triple "deckers." I am also going to see if there is any way to better educate the grandmother. I am not able to visit anytime soon, so it will have to be an advocacy person in the area. I was told grandma figured since he was a quad, he was going to "die" in two years, as she claimed, and she did not want her house "messed up" by him, or ramps put up. I invited a quad to go visit my friend in the hospital. Cool guy-was injured in the 1960's! But it is up to the mother to take charge and I am not sure she is doing this as well as she could. If it were me,( I would think) I would take my son home anyway if I felt I had enough homecare services and felt he would get a better treatment at home. I wouldn't care what my mother said. Then, if the mother wants to evict or raise the rent, or cause trouble, then take care of this through a lawyer. She would have to show she had good cause to evict the family with a son who has a disability. Yes, I think getting an apartment is the best thing at the moment if we can't push the grandmother to agree, or mother to over-ride her. I am also so angry the hospital neglected him so much over the 9 months- in the ICU. There is no way in this day and age, people should be getting pressure ulcers and sepsis in the ICU, and severe contractures. This is only due to neglect. They have refused to take responsibility. At least this second time around, they are doing some PT with him in the bed, and a little better, but the poor mom is there for up to 10 hours a day helping to feed, change his wounds, advocate, etc. She said it was hard to turn him because his arms wing out due to contractures and this is the main problem needing more people to aid. We have to have several plans in place, because if not, the hospital will make the choice for us. Thanks!

[Ratticis]

Sounds like you need a lawyer reguardless. Grandmother sounds like . . . Ya

[wheeliebear75]

Sheesh! Glad she isn't MY grandmother! His circumstances should at least put him at the top of any waiting lists to get into an accessible apartment. BUT the irony is that he may not be able to have extended family living with him as they would have in a private home. They generally allow children only when they belong to the disabled person......since he is uncle or brother (couldn't figure out if HIS mom was THEIR mom as well OR if their grandmother)......I'd be quite surprised if they were all allowed to move in. But a question I've got.......where is his social worker & what if anything are they offering as solutions? Maybe it's only some hospitals but when I got releaseed they didn't just stick me in a wheelchair & tell my Mom to take me home.........a social worker went to my house while I was still in the hospital to make sure that everything was ready for my arrival home. They got ramps for the steps in & out of the house & made sure that everything was set up for me. And we had someone visit 6wks & 6mo. after I came home. I guess I'm even luckier than I knew by being at Children's.

[Advocatewheeler]

wheeliebear75, on Nov 30 2009, 06:03 AM, said:

Sheesh! Glad she isn't MY grandmother! His circumstances should at least put him at the top of any waiting lists to get into an accessible apartment. BUT the irony is that he may not be able to have extended family living with him as they would have in a private home. They generally allow children only when they belong to the disabled person......since he is uncle or brother (couldn't figure out if HIS mom was THEIR mom as well OR if their grandmother)......I'd be quite surprised if they were all allowed to move in. But a question I've got.......where is his social worker & what if anything are they offering as solutions? Maybe it's only some hospitals but when I got releaseed they didn't just stick me in a wheelchair & tell my Mom to take me home.........a social worker went to my house while I was still in the hospital to make sure that everything was ready for my arrival home. They got ramps for the steps in & out of the house & made sure that everything was set up for me. And we had someone visit 6wks & 6mo. after I came home. I guess I'm even luckier than I knew by being at Children's.

You are lucky you got such a good SW at Children's. A SW dept is supposed to do this, go to the home and prepare. But they are certainly not doing this at this Somerset County community hospital.

Yes, I am also glad she is not my bio grandmother... I agree, they should put him to a top of a waiting list. My guess is this hospital is not going to keep him there long enough for his (biological) mom to get an apartment for him. It is also likely the kids are not going to be able to come and stay. So this is the problem too. He gets along great with his mother, and she has been keeping his spirits up on a daily basis, even driving from NJ to PA on an almost daily basis (up to 2 hour trip each way) to see her son, bringing the kids too. The father and his SO visits but not as often, and not as involved in his care.


The social worker(s) at this community hospital are BAD! Their entire case management dept is bad. I did not get involved until last year- April 2008. Let me tell you the story- It is so bad their ignorance and and communications with me when I confronted them was almost funny. He had been in the ICU for 9 months at this point. I first started with phonecalls, before I drove over there- Then the social worker at the time (over the phone) told me she had called 100 nursing homes and facilities, and no one would take him. She said he was "just a vegetable"... etc. I asked her what type of vegetable he was? She would not answer directly, telling me he had no chance in life because he could not sit up or use his arms or legs... (ugh!!) Now remember, she is saying this vegetable thing to ME! I am also a quad! She doesn't know this because it is over the phone. This got me so angry I got in the car to drive over there (several hours of driving).I took pictures of him all contracted, on oxygen, and with even sores between his arms because they had not done any PT or ROM on him. His hands had contracted like claws and arms like wings. I then had pictures of what he looked like just before he went to the hospital, sitting in a power chair after he left Kessler in August 2007. What a horrible difference! He was now bedbound with stage IV wounds, contracted, emaciated. I handed photos to out to staff in the office of the President, with a question on the top- What happened to " name of friend??." This got their attention. Then they met with me in a meeting. Not a particularly constructive meeting but I got to ask them the hard questions- How did this happen? What are you going to do now to help him? (no direct answers- he was to blame due to his behavioral problems- refusing care- refusing to have wounds cleaned, etc...) He did not even have an accessible call bell. I went to Office Max and bought him a dinner bell to use. This cheered him up.

I found Kindred Long term Acute Care Facility (for profit organization) in PA to take him, had to jump through hoops with his Medicaid insurance to get him out of NJ on a waiver, to PA. The NJ only had Medicare and he did not yet qualify. The hospital still wouldn't release him, so I had to contact the Board of Health and Senior Services about his neglect, etc. Still would not release him, telling me he was too fragile to go by ambulance to PA. I made phonecalls to the head of the hospital, case management, to his doctors, etc. In a meeting (when they finally saw I was a wheelchair user) I was told by his doctor the family should just "get real" that he is going to die, and put him in hospice (this was his doctor saying this- Thanks Dr. A. Malik). I contacted an air ambulance and sent them the bill for $6,2000. Then I got an email over the weekend from the VP telling me he had a miraculous recovery over the weekend, and would be able to go. So we got him there- for 15 months. Then the circus began all over again when he was sent back to NJ this summer. He was sent to Monmouth LTAC. It was supposed to be they would keep him at least 25 days for his wounds or until he was healed. Well, this lasted 26 days, and his wounds were not healed- then sent to a nursing home (Gateway). This nursing home was the only one we could find. I understand it was dirty, neglect.. They could not handle a quad apparently, turning him every two hours, etc. He went back and forth to hospital to LTAC to nursing home for several more weeks to months- then sent recently back to this Somerset County hospital! The family refused but they were told his insurance ran out, the doctor dropped his care, so you have to leave! So this is where he is now. The LSW told me he had been accepted to an Easton PA LTAC. I called them, and learned they did not accept him. The LSW told me he should get hospice to help. I had to inform them he was not terminal.
Then suggested a colostomy to keep his wounds clean! (ugh!!) I gave info on Flexi-Seal, for fecal containment management. Now they are not returning my calls or emails. I have called VNA and other associations and organizations to get help. I asked for them to check into sending him to Robert Wood or JFK, because they would be more able to handle a quad. Then I received an email from the LSW that he would talk to the mother to see how well she did in contacting other facilities to send him! (ugh!) He cannot leave there until they work together on this.
So the plan was to get him home. Now the mother is being taken down by her own biological mother.. (yes, the kids are by two different fathers.) The LSW will not work with them to get them together on this. I am trying to do this but it is long distance (mostly on the phone).

My guess is we will get him into another LTAC for his wounds. We contacted the Kindred in Rahway and saw horrible photos on their website. So not going there. Anyone recommend a good care facility for a young 20+ year old quad in NJ? Thanks my friends!

[Tetracyclone]

Advocate,

Bless you for enjoying The Good Fight. Is there a point at which publicity, or a good pro bono lawyer, would help? So often the threat of litigation moves people to action.

Soldier on!

Edited by Pwuff, 30 November 2009 - 03:45 PM.

[greybeard]

AW you are to be admired for your efforts on behalf of this most unfortunate guy. Best of luck in your fight, and to him for somebody (anybody?) to take responsibility for his care. Pwuff's suggestion is sound.

[Advocatewheeler]

greybeard, on Nov 30 2009, 06:11 PM, said:

AW you are to be admired for your efforts on behalf of this most unfortunate guy. Best of luck in your fight, and to him for somebody (anybody?) to take responsibility for his care. Pwuff's suggestion is sound.

Thanks to both of you! I don't mind the fight as long as my buddy quad is going to benefit. We have to stick together! The trips back and forth to the hospital are nightmares, and leave him open to more infections, ulcers, etc.

I do believe a good pro-bono lawyer would help the situation. We have started looking... I was able to find a mom with a quad son (same level/same age)- She is going to try to help support the mom! This mom is great, just simply overwhelmed right now and can use a lot of support so she can stand up to her mother, learn some of the ropes from more experienced mom's, and get her son home with plenty of help from VNA, etc. I think the media may actually fuel fires right now, and we want to protect him as well as ourselves with good guidance first. Thanks!!

Edited by Advocatewheeler, 30 November 2009 - 08:51 PM.

[Advocatewheeler]

greybeard, on Nov 30 2009, 06:11 PM, said:

AW you are to be admired for your efforts on behalf of this most unfortunate guy. Best of luck in your fight, and to him for somebody (anybody?) to take responsibility for his care. Pwuff's suggestion is sound.

I just received a note from a lawyer to answer the question if the grandmother could evict the mother and son because he is a quad and she doesn't want him home. The answer is, yes, she could try. Since it is a month to month lease, she would need to have cause and provide it in writing for eviction in 30 days. But the real problem she would have is enforcing it. It would more than likely be thrown out of court, because the reason was due to son having quadraplegia. On a good note, the grandmother has been made aware of this, and she appears to be backing down. Others are starting to put pressure on her. I think we can advocate in different ways. We also got a new visiting home doctor who will be able to take care of him once he is home. Thanks friends!

[Izziwhizzi]

WA

Why haven't you written to Obamas office with the story? TV? Press? Its pretty disgusting whats happened to him re his condition post Kessler and some media attention may help get the issue resolved or at least the apartment found for him to move into with his Mum and help.

Wishing you all the best,

I xx

[Advocatewheeler]

Izziwhizzi, on Dec 2 2009, 01:01 PM, said:

WA

Why haven't you written to Obamas office with the story? TV? Press? Its pretty disgusting whats happened to him re his condition post Kessler and some media attention may help get the issue resolved or at least the apartment found for him to move into with his Mum and help.

Wishing you all the best,

I xx

I think media attention will be good, but just not at the moment. But this community hospital and the care his simply horrific. We are trying right now to get the waivers for Medicaid so he can get more hours at home for homecare. His mother also was so angry at the hospital negligence, she wanted to take it to the papers, but decided against it. It really is up to my buddy if he wants media attention or not about his horrible ordeal. I told him about this list. He now has a very cool new computer operated with your head movements! I hope we can get him online and he can post here, write to the local paper, President, etc about his experience and the need for hospital reform, not simply insurance. But we need to have all our ducks in a row which we have control over first, including his insurance, etc. I can tell you the social services dept does not seem too pleased I have been pushing them so hard, and getting his family to push as well. But this is the only way to get him out of there safely and to independence! He may need surgery to get his arms straightened, and will probably need to use a chin or sip and puff once he is able to sit up. We will win this one. His mom wants to have a party once he gets home- hopefully by Christmas- If we do- Online my friends- you are all invited!

[Izziwhizzi]

ok, we will all be there :-)

I x

[Advocatewheeler]

Izziwhizzi, on Dec 2 2009, 08:03 PM, said:

ok, we will all be there :-)

I x

Great! Are you coming from the UK? If we get him home, it will be great (and a miracle given all the barriers).. Thank you!

I just also learned a family homeowner may not need to go to court to evict.. Either way, I hope it does not come to this.

They needed to spend-down to get back on Medicaid- I found a handsfree telephone activated by blowing on it, and some other cool adaptive home items. Best,

AW

[Ratticis]

Sounds like things are finally coming together. Very glad to hear. Wish you and your friend all the best!

[Advocatewheeler]

Thanks. Good news. Starting to come together for sure. The LSW tried again to push for us to get him to a discharge. I filed complaints this week to the president of the hospital's office. That got a fast response. The VP told me she did not wish for me to write to the hospital by email, and I would have to come to a meeting or go on "teleconference call." I reminded her of our rights for full communication, and nothing in the patient rights bylaws prohibits email communication. I also reminded them I have spoken to an attorney (he is GREAT) who let me know if they did discharge him without a plan, it would be criminal. The attitude changed. I heard the promise they will try to keep him there longer until we have all insurance in place and waivers. The good ole grandmother has backed down, and will be allowing him to come home. I think she now gets he will be getting sufficient home care services of up to 12 hours a day (private duty) if the insurance waiver is approved. It sure is taking a ton of work, but I think we can make this work. Thanks!