Thursday, June 02, 2011

Why I hate social services

We're not impressed.
© Jessie Kirk Photography 
In case the fact that I'm from Portland, Ore., didn't tip you off, I should tell you that I'm politically left on many issues: I think not raising the debt ceiling would be catastrophic; I think Obama's health care plan is woefully inadequate but still the best thing that's happened to this country in a long time; and I think a hair dryer would do a better job as president than Sarah Palin. (Why a hair dryer? I don't know, but at least it can dry hair quickly, which is more than I can say for Sarah Palin.)

But after spending a year in the maze of bureaucracy that is social services, I can definitely empathize with the visceral feeling from Tea Partiers that we need to shrink government down until it can swim in its own underoos.

Ever since meeting my first social worker in the hospital, I've been trying to figure out what the hell they do. Even though every single one of them is an incredibly nice, kind and caring person, as far as I can tell they do very little of concrete value. They don't physically help with child care or housework; they don't have a list of services they offer; they don't understand the services they refer me to, nor the qualifications for them; they aren't therapists; they don't help fill out applications; they rarely follow through to the end of a bureaucratic wormhole; and, they waste hours of my time asking me the same questions and repeating faulty information previous social workers have given to me. They only thing I have discovered they do well is refer me to other social workers who also don't do anything of real value.

Ahem. A not-so-brief summary, if I may. (And please keep in mind that while we're waiting a month or more to take our next jump through yet another hoop, the precious plasticity of my son's brain — i.e. its ability to rewire around the damage — is hardening.)

My first social worker was while I was pregnant on bed rest at the hospital. Confused that she didn't seem to have anything to offer me, the only thing I could think of to ask her for was how to get a hold of a doula or other person who could be my advocate during the birth process. She literally gave me a packet of earplugs, on which was the number for a doula service, which didn't exist anymore. The earplugs did come in handy, though, so I guess that's something.

My second was a man at the NICU who came at a time when I was very, very angry with everyone and even when I did manage to swallow my emotions long enough to express a need, he would simply nod as if that helped in some way. After I made it clear to him that he was useless, the hospital's social workers generally avoided me, which was fine by me.

Then a woman called the day before we were moving into my in-laws' (my husband and I had given up trying to take care of newborn twins alone) to say she was a nurse from the county who could help me. WHERE HAVE YOU BEEN? I asked her, imagining a NICU nurse who was offering part-time nanny services. We agreed to meet as soon as we moved back home, but I discovered at that point that she was yet another nice person who just wanted to talk and "connect" me with "services."

Which, to her credit, she did, leading to a meeting of three people from the school district who still just sat around and talked. Those people got me a meeting with Malachi's Early Intervention physical therapist, who at her first visit still was only planning to do an intake interview (i.e. talk) until I insisted she actually do something. To this day she is one of only two people from the government who physically help me treat Malachi.

The not-a-NICU-nurse-or-nanny also got me a meeting with someone from some other branch of government called Developmental Disability Services. A man came to my house and, as I had come to expect, simply talked. By this time I was really angry and I asked him what he was physically going to do to help me and when that would be. He told me that he was simply the intake social worker and that someone would contact me later to help, if we qualified.

Months passed. I wrote to the not-a-NICU nurse to find out what happened. She dug around and discovered that the man from disability services had completely misspelled my son's name and asked his doctor for medical records. Our pediatrician never responded (likely because the request was indecipherable) and we were stuck in a bureaucratic limbo. Not-a-NICU nurse jump-started the process, getting the request for medical records resent, which finally led to a phone call from a woman who still had Malachi's name misspelled and wasn't informed of any of his medical history, despite that being so vital as to hold up our application process for months.

Yesterday was a meeting with that woman, her supervisor (for some unknown reason), and our not-a-NICU nurse. I think it's fair to say I was combative at this meeting and demanded to know what they were going to do to help me. They explained that their job was to help me "identify needs."

I said: "OK, I need three things: Money, time, and medical care for my son. Help me get those things."

Well, respite care services had been cut, they said. Have you tried Social Security Disability, they asked, like EVERY SINGLE SOCIAL WORKER BEFORE THEM. And, just like EVERY SINGLE SOCIAL WORKER BEFORE THEM, they didn't believe me when I explained to them that you have to be very, very poor (i.e. have less than $2,000 in total assets) to qualify for Social Security Disability and that it was a waste of my time to enter into the very lengthy application process for something I knew I would be denied.

Finally, I complained that our Early Intervention physical therapist was the only person who physically put her hands on Malachi and helped me treat him. This latest in a line of more than a dozen social workers assigned to us this year said: "Well, that's her job."

And I said, "Yeah. And I wish there were a whole lot more of people like her and a whole lot fewer of people like you."

16 comments:

  1. I think everyone who has ever encountered social services in a family situation hates them. Because there are so many things they could do but certain protocols mean they cant and it sucks. I hope you get everything sorted.

    My friend is becomming a social worker to try and change a few things because she was treated so badly by them when she was younger.

    Claire

    http://www.hearthandmade.co.uk

    ReplyDelete
  2. I have no had to deal with that many social workers. There was the case manager in the NICU who made appointments and referrals (which pissed me off - I come in every day for two months, but you won't discharge my children until we've chosen a pediatrician so YOU can make the appointment?!).

    There was a social worker, who came to talk to us maybe on the first or second day, and I do not remember what she said. The next visit was a week later, I think, and you could tell her visit was "you're daughters are 10 weeks early, one of your daughters died, and you have triple the amount of hormones you're coming off of you're more inclined to have PPD, so do you because if not I can cross you off the list."

    She never asked our financial situation, never gave us info on places that could provide any type of monetary support (like Medicaid or SSI or whatnot) - apparently they assumed that since me and my hubby were both attorneys we were loaded and needed no help, despite the fact they knew we had been living away from home for months, and without even asking how I was getting paid while on super extended maternity leave.

    The only other person (aside from EI) is the Medicaid person, and I just let her come to my house and talk and ignored her, because I don't need your help applying for Medicaid because I used to do that in my previous life!

    I am sure that most of them hate it as well that they can't do anything except fill out paperwork.

    ReplyDelete
  3. Thanks, Claire. Good luck to your friend, but unless she's planning on starting a revolution, I don't know what she can do. It's the system that's broken. As I said, all of these people are very nice and trying hard, but the end result is that nothing gets done.

    Amy: You're on medicaid? I thought you had to qualify for SSI to get that. Let's talk.

    ReplyDelete
  4. Check into Medicaid WAIVERS. I had never heard of them until last fall - 12 years of paying for Ben's needs myself, too "wealthy" for any help but still wondering how I was supposed to pay for things.

    Another mother of a special boy told me about them. Here in Virginia, Ben qualifies for the one called EDCD. The letters stand for something about Elderly/disabled children.

    Fill out the papers as if the child is filling them out, they are based on the child's finances, not the parents. Don't let anyone talk you into revealing your (the parents') finances.

    It took about 3 months, but now I have a paid caregiver for when I work and respite care. It comes with a Medicaid health care card, but so far I haven't found much it helps with since they say most PT's don't take Medicaid. But it's supposed to help with things like eyeglasses and dentists.

    The experience has made me very glad I don't "need" Social Services. I can't imagine the stress of the poorer parents of special kids having to actually beg for the services the child needs.

    It just seems wrong to me that children, the disabled and the elderly are victimized by the health care industry. I'm not talking about each individual in the system because a lot of the individuals really care, but the system in general stinks.

    Soapbox done. Almost . . . part of what is aggravating me at the moment is that I've signed my 90 year old father up for Medicare B. Why he didn't sign up 26 years ago is a mystery. They charge a 10%/yr penalty for not signing up . . . yep . . . a 260% penalty is what we're looking at EVERY month - it's not a one time fee! Other folks pay just over $100/mo. Dad will be paying over $400. That's half of his monthly Social Security income.

    If he didn't live with us, what would be left for him to buy food and pay rent/taxes for a place to live?

    Soapbox done now, for sure. Ben wants to go to bed. Goodnight.
    Faith

    ReplyDelete
  5. Yes, look into Medicaid waivers. My son is 12 months old and was recently approved for medicaid through 2018. He has spastic quad cp, epilepsy, cortical blindness, and hearing impairments. All his medical bills are covered and we are currently filling out paperwork to have our nanny become a state employee so that the state can pay her to take care of our medically complicated son. Additionally, when our son ages out of the public school system at age 21 and he will need support (in my mind, a top notch residential program or a 24 hour aid in a future extension of our home), Medicaid will cover it. And, of course, a special needs trust might not be a bad idea to set up so that your child will be less likely to be disqualified for services because of house hold income. We live in new York state... Apparently one of the best possible states for the disabled.

    By the way, I agree with everything you wrote about hospital social workers.

    ReplyDelete
  6. Oh, btw, Faith, 260% is crazy!! I guess you can take solace in not having to have paid $100 a month for 26 years.. but I'm sure he paid for health care another way.

    ReplyDelete
  7. If you need info on special needs trusts, I did those in my lawyering days as well! It's also a good idea to tell anybody in your family who may have a will and may be leaving you money to let their attorney know about Malachi's condition, because they'll want to make certain in their will that he's protected (a good attorney will hear "Malachi is disabled" and know what to do!).

    ReplyDelete
  8. The early intervention services here in PNW can be hard to navigate, but can be done. I agree with you, that there are a myriad of useless people to wade through to get there, and then, when it comes to the next step, past the "birth to three" is school aged services.

    It's a fight. As for the medicaid - my kids qualified for a time because of their disabilities; Levi because of CP, Vivi because of her issues at the time. There is no income base qualification for that. We also did not qualify for other services, but that is helpful for costs above and beyond insurance.

    Remember: Take what you can glean from each social worker, but prepare to take notes and research yourself.

    We had a nurse help with Vivian during nights when the kids first came home, and fired them: I got very tired of watching them fall asleep next to my daughters medical equipment while I was up rocking and pacing with my other baby (whom had no medical diagnosis at the time)

    Believe me, by my kids' 3rd birthday I felt like I had trained the social workers on what we can do to advocate for our kids; and the only thing good from that is that they would pass the info on to others. I worry that the young mothers with special needs kids have no way of finding these services and programs on their own, what happens with kids whose moms don't know how to stand up for them and advocate?

    Get ahold of me if you need, want or find the time. (yes, I know how much free time you have,I remember those days, lol) But, I know of local resources...

    ReplyDelete
  9. Oh, thanks, Erika, that would be wonderful. Your kids are so much older so it would be wonderful to talk to someone further along in the process. Please feel free to e-mail me. There's a little blue envelope over there in the right hand column that will connect you to me. I looked for your e-mail address on your blog but couldn't find it.

    ReplyDelete
  10. I want to knock peoples' heads together on your behalf. I feel your frustrations!
    So far, I've been luckier with my resources here in NJ (though I did meet some completely useless people, of course). But your situation? Ridiculous.
    I hope things get better for you.

    ReplyDelete
  11. Anonymous4:08 PM

    You sounds like a narcissisitic, difficult person, opinion basher with no real understanding of what you're talking about.

    xoxo Tom LICSW

    ReplyDelete
  12. Hi Tom,

    So sweet of you to take the time to write that, but since you did it on a website written by and about me, the narcissistic part is pretty much a given. Hopefully you offer more concrete help to your clients than you have to me or than my own social workers have given to me. To date, they still have not offered me a single bit of actual help and mostly send me on wild goose chases when they're not completely ignoring me. Calling that a waste of my time and of taxpayer money seems fairly logical to me, but if you'd like to offer evidence as to how I've failed to understand the situation, I'm all ears.

    ReplyDelete
  13. Anonymous7:30 AM

    i wouldn't say this was ALL social workers - maybe need to change the title. i have had social workers work with my family on and off - and yes there have been a few that havent been great but there are some great ones who genuinly helped us out of our situation at home and supported our family to the best outcome. social workers support you - supporting you means you have to do all you can to change too, they can't force you...

    ReplyDelete
  14. I hate social services, too. For these reasons and a whole lot more.

    See, my boy wasn't born with CP. No, he was born perfectly healthy, if three weeks ahead of schedule.

    My son was shaken when he was an infant, by a person to whom I had entrusted his care for a few measly hours while I went grocery shopping. His symptoms didn't manifest for a few hours, which happens in some cases of Shaken Baby Syndrome. My life for the next few years involved police, social services, child protective services, lawyers, doctors, more lawyers, therapists, MORE lawyers, and a lot of swallowing angry words I wanted SO BADLY to say but couldn't because of who I wanted to say them to and not wanting to risk losing my son because of a bunch of inane bureaucratic monkeys.

    So, yeah. I can relate.

    ReplyDelete
    Replies
    1. UGH. That is so rough. I've heard several stories now about shaken-baby syndrome from caregivers and they all make me seethe with rage. You deserve a medal for keeping it under control!

      Delete
  15. This comment has been removed by the author.

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...