Fight to live independently

[nikki]

Hi Tammy, I am so sorry that this happens. I am an advocate, ad hoc, which means I do freelance advocating at state and federal levels. I don’t belong to any organization, it’s just me and a group of friends who have been advocating the state and federal bureaucracies on our own accord. Yes, we have something similar here in California. Although I do not need to live with someone, I am not allowed to have extra nursing care hours until I have what they call the network circle. Basically, someone who was willing to be obligated to my needs at any given turn that the state cannot provide a caregiver. It is absurd and yes very controlling. I would suggest beginning at a level of vocalizing against this issue. All state meetings are public and open to the public so, I would start at state websites and find out when they hold their zoom meetings and see if you can attend and voice your opinions. Try your state disability, state Social Security department’s first. I don’t know much about New Jersey, so I don’t know how much nonprofit advocating organizations help out there. Out here, they go where they get funded so their beliefs are for us vocally but not realistically. Basically, they say they help disabled people stay independent but, if it goes against anything that the state might use against them and keep their funding from them, they don’t fight for you. So, I would stay freelance and start vocalizing at that level. Emails are good too but not as effective as a voice being heard out loud, most zoom state meetings and federal meetings are recorded so whatever you say, sticks and is heard. If you have more questions, come out reach out to me at [email protected]

[tammy]

Thanks so much for your info! I’ll definitely be reaching out to you. I feel so dumb when it comes to all of this state stuff. What Zoom meetings are you referring to? I know nothing about any of that or even how to find out. I’m gonna email you 🙂

[deann-r]

Ugh, how frustrating. I can’t say about the rules, but it reminds me of the situation when I moved on my own. The county wouldn’t provide coverage if I didn’t have someone overnight but they weren’t willing to pay for the hours to cover it. So basically they were telling me to get a roommate. I argued a roommate wouldn’t be responsible for me so if they wanted me to have someone overnight they must provide me the hours to do so. They also required a life alert type thing which I also think is unnecessary. I did get the coverage, so have someone overnight. It took some getting used to but it is kind of reassuring having someone overnight. Can’t imagine having someone around all the time though. All I can say is keep advocating for yourself. Sometimes it’s a struggle, but in the end it usually works out how it’s meant to be.

[tammy]

So when you initially started the process of getting your own place, did you speak with the state/insurance ahead of time about the requirements? Or did you just get the place first and deal with all the bs “rules” later? See I’m already on a waiting list for an apartment but my fear is if, let’s say hypothetically they call me tomorrow saying they have a unit available, & i take it but then get told no by the state about living alone. And then on the other hand, I’d sure hate to take my name off the waiting list and try to get all of this bs situated first, then have to go back on the waiting list again & wait another 3 or 4 or however many years for me to be offered another place again. Because I’m already high on the list. I feel like I’m screwed no matter what I do. And I sure as hell do not want to pay rent for a year and have the place sitting there not even being able to move in because the state stuff taking forever and a day. Ugh! I don’t know what is the right thing to do. I haven’t even told my insurance company or the state that I am already on a waiting list. And I don’t even know if I should or not

[deann-r]

It’s definitely a difficult balancing act. In college I tried transferring schools but could never get care & housing lined up at the same time so didn’t switch. It was so long ago it’s hard to remember, but after college once I had caregiver hours secured I just chose where I wanted to live and notified the county of change of address after the fact.

[tammy]

That’s what I’m wondering if I should do. Just move and notify them after the fact. I already have nursing secured. The people who are with me now would just be with me at the new place. Considering it’s no inconvenience of a drive for them because it’s just one minute down the street from where I am now LOL. And I have overnights. I have 16 hours per day so I have a morning shift and a night shift every day. And I have more than enough people who can “come to my rescue” if I need them in between shifts. Especially these days when we have smartphones and home devices like Alexa. They can’t expect me to just magically find somebody to live with for the rest of my life. I can’t go begging strangers on the street corner to come to live with me lol. And all of my friends who I would actually not mind living with are already settled in their lives and have a place already either with a spouse & whatnot. I just worry that they would cut off services until I got things straightened out. What would you do in this situation?

[deann-r]

Obviously I can’t tell you what to do, but it sounds like you have a reasonable plan in place. It’s important to have backups and backups to backups. I would argue if they cut services they would be putting your life more at risk. Having a roommate certainly doesn’t ensure security. That’s BS in my opinion.

[tammy]

It definitely is BS. And do they honestly think that even if I had a roommate that that person would just never leave the house ever? LOL. Do they not think that I ever leave the house alone? Or with friends? With people who are not caretakers? But anyway yeah I don’t know what the right way of going about it is. I mean what would you do if it were you? Would you just go ahead and accept the place and deal with the fight later? That is if I were to get offered a place before don’t even answer from the state. Just looking for others opinions on what they would do if it were them.

[tammy]

Wanted to give an update on this thread… So I still have no answers from the state and my worst fear just happened. The property manager called and asked to see some more documents and said that they want to do a showing of a unit with me soon. Which means they have a unit available. So I have no idea what to do now. Was hoping to get some answers before being offered a unit, but of course nothing ever goes my way. Any advice that any of you have would be much appreciated. In other words, what would you do if it were you? I don’t know if I should accept the apartment and then deal with the nonsense later or turn it down and go back on some waiting list, & end up on a never ending cycle of waiting lists. I’d actually like to move into a place before I’m 90 years old. LOL. I know some people who have been on waiting list for housing for 7 years and still have not heard back. I would hate to have that happen to me. Would just love some advice from you all on what you would do if it was you

[adam]

I’m in a whole different country so I have zero knowledge in regards to your particular situation.

Personally I’d take the place and tackle the other BS if/when that crops up. You’ve already done a lot of working & waiting to get this far, I wouldn’t flush all that too easily. Right now you got no unit & a potential problem – you could have that potential problem as well as the unit.

As long as you’re not opening yourself up to any legal blowback the worst that’ll happen is you wind up where you are now. With a bit of luck you move in, live your life your way without whatever issues they think you’ll have and no one bothers you. It could be more hassle for them to push this nonsense if you’ve already got the place. If your bureaucracies are anything like our’s they’ll usually take the path of least resistance, so if they are gonna push it make their lives as difficult as possible – it’s only fair to return the favour 😉

[tammy]

Thank you that is really great advice! Yeah I’m not sure if this rule is specific to my state or if it’s everywhere. I spoke to the Ada hotline and they said they “believe” this is a violation of my rights but they can’t say 100% for sure. They are going to investigate it because they recommended that I file a complaint against the state which I did. Hopefully that doesn’t create more of a shitstorm, excuse my language LOL. I’m definitely leaning more towards taking it and dealing with the fight later on, but at the same time in the back of my mind I still have that fear like what if they pull my services immediately with 1 quick phone call? I don’t know if there’s any laws that say they are not allowed to pull services without written notice and without giving you the chance to appeal their decision. Because if it were able to happen immediately that they cut my services, I would be in serious trouble because I don’t have anyone else to take care of me. I live with my mom but she is not able to lift me anymore. So I would be stuck in my chair 24/7 while trying to get my services back. Such a double-edged sword and it’s hard to know what to do when you have nobody to talk to about it because they don’t know anything about being disabled, and no one to offer their opinions or advice on what they would do if they were in this situation. Obviously whatever advice I choose to take or not take is up to me but it is nice when other people weigh in on how they would handle it. So thank you for your input! I definitely appreciate it. I’m just super stressed because I only have until Tuesday to make this decision and I still keep going back and forth with the what ifs. Your outlook definitely helps and is definitely similar to the way I’m feeling about the issue as well. So I guess we will see what happens

[tammy]

And also how you mentioned “As long as you’re not opening yourself up to any legal blowback”… that’s also what I’m unsure of because I don’t know if that’s considered violating the contract. However, I was never told about this stipulation until after I already applied for the unit and funnily enough, my insurance case supervisor didn’t know about it either until HER supervisor told her about it. Also I was never shown this contract stipulation in writing

[adam]

This sounds like an absolute clusterfu … umm, schamozzle. Like no one who should know knows anything or are just passing the buck hoping you shut up & go away.

In situations like this I hit the phones & break balls until I get answers. If I don’t like the answer I become a pain in their bosses arse. Threaten things like going to the media, litigation if their incompetence leads to dangerous outcomes for you etc. Government departments here piss themselves over that stuff.

You’re from New Jersey? If all else fails invite them to Satriale’s & make em an offer they can’t refuse lol (sorry, just finished a Sopranos re-watch).

Seriously though this garbage makes me see red & I hope you can find some answers. If you’ve got some links to the relevant stuff I’d be happy to have a look see if I can make some sense of it. Again different country but I used to work on government BS red tape stuff so maybe its similar.

[tammy]

Thanks! I’ll take all the help I can get! And I know it’s makes me see red as well. Like how dare you think you have the right to control me. If you feel like I’m putting myself In Harm’s Way than that’s my business time. They themselves could fall down the stairs and their own house and crack their head open. But does that give somebody else the right to tell them that they can’t live alone? No. I’ve been hitting the phones and emails for like 2 weeks straight with still no answers. I’ve emailed people in legislation, I’ve contacted and disability lawyer, I’ve contacted the New Jersey civil rights email and phone line and they never freaking answer their phones ever no matter how many times I call. And they still haven’t answered my emails. The ada.org was the only phone I could get to answer and they are going to open an investigation but this could take forever and as I’ve mentioned I have until Tuesday to make a decision so still have no idea what to do