“We’re here to help you (feel hopeless)”

Helping hand

Image by Jason.Hudson via Flickr

Once we got our son’s autism diagnosis, our family was entitled to a wide variety of government-funded help and services. One of those entitlements was to funding for us to spend on the services that we chose as a family – whether it was in-home help to care for my son, or attending activities outside the home. The express purpose of this funding is to give the carer a break and some help. In order to access this special funding, we had to first get a “needs assessment” from the local organisation responsible for deciding how much money we should have access to each year. I’ll call that organisation, “orgX”. It is not a government organisation, but it is government-funded and passes out their money. (If you’re following me so far you’re doing really well; it is a ridiculously convoluted system which just adds extra stress and confusion to an already stressed and confused family.)

My son tried to push the needs assessor from orgX, out the door the moment she arrived, tried to push her off the couch when she sat down, and generally screamed and cried a lot at her presence. This was back when my son was receiving no therapies yet, and his behaviour was aggressive and frightening. The assessor was used to seeing this from autistic children though and took it in her stride. Eventually my son went off to his room for some self-enforced time-out and passed out from exhaustion.

We managed to get through all her questions. She noted how incredibly hard it was for us to have any visitors to the home, though I did tell her that he wasn’t as extreme with people he’d previously met. She also noted how hard it was for us to take our son anywhere new; that it often lead to lengthy meltdowns. I know now that these are classic problems with autistic children, but it all had to be noted down to make sure we got the level of funding we were entitled to; the worse our situation was, the higher the level of funding. She marked the application as “urgent”, and told me orgX would get back to me within a couple of weeks.

A couple of weeks later, with no contact, I rang orgX to follow-up, as the needs assessor had told me to do. The person who answered the phone assured me the quickest orgX ever got through an application was at least a month, sometimes two. I said it had been marked urgent and they said that made no difference. But all the waiting was going to be worth it, I told myself as I continued through each nightmarish hour and day with my son; I was finally going to get the help we needed.

Finally, orgX processed my application. I was now entitled to… nothing! No, really. OrgX told me that they could provide funding for me to have people help me at home, or for us to go out to do activities with our son, but because he wouldn’t let people in the home and he hated going out, they couldn’t help me. I kid you not. I was confused, and upset, and frankly incredulous. I argued that he could get used to people over time, that he could get used to new experiences, but they just quoted back to me the information in front of them about his recorded difficulties.

If I had been a more experienced mother of an autistic child, I would have pointed out that with the right help, my son wouldn’t panic at new people and situations. That he would learn to adjust to anything given enough time and preparation. And that the condition is not a static one; that just because a child had those issues at one point in time, didn’t mean they wouldn’t have improved or changed later. Because I didn’t know all that, I thought they were telling me something I just had to come to terms with; that it would never be easy to get my son help, and he wouldn’t get better.

As was though, all I could do was pretty much beg orgX for their help, ask them to reconsider. And that was what I did. The person on the other end of the phone eventually agreed to keep searching for someone or something which would be useful to easing the care of our son.

Weeks went by, and orgX couldn’t find anyone to help us, and we weren’t given any funding. Every so often I would call them or they would call me, for an update. They’d suggest an organisation who would help, I’d call the suggested organisation and be told they don’t work with kids my son’s age. Or orgX would tell me to try to find someone who would be willing to work with our son through a specific charity, that charity wouldn’t have anyone available at the moment, and so on.

Finally I was told that orgX decided to leave it to me to find someone or something for my son to do, since they couldn’t. They told me I had a certain level of funding now granted to me – and let me tell you, how the funding is grouped and handed out is ridiculously hard to figure out, some parents find it so confusing they choose to never use the funding even though they badly need it. Again, I am not kidding.

Well guess what, I did find people and groups who were able and willing to help my son. It took me a little while to figure out where to look for them, but it was a lot easier than orgX had made it out to be. It was a matter of placing free adverts online, and calling the local charities, and getting to know other parents who told me how they used their funding. There are ways in which I’ve been told I can use the funding which I really want to do, but the places I want to use the funding with are confused by orgX’s forms they have to fill out and tend to say “no” rather than “let’s see if we can figure this out”.

I’m glad I persisted with getting the funding we were entitled to from orgX, though fighting for the correct level of funding rather than the tiny amount orgX originally allocated us was a battle that I’ll write about another day.

These sorts of experiences are far too common in the area of special needs assistance, particularly government-funded assistance; charities and private organisations are much better to work with where-ever possible. It should have been as simple as taking the word of my son’s developmental pediatrician; that our son had autism and our family needed help. Instead they make you jump through hoops for a pittance, the money needed to keep those hoops in business would be obviously better spent on the needy families. The whole system needs an over-haul, but it’s notorious for families in my position to not demand change because they’re afraid organisations like orgX who currently hold the power, will punish them for the public criticism, by making them lose what little assistance they’ve already been granted. And from having spoken to individuals working for orgX, the fear is not unfounded.

Even when I write these posts I worry about organisations coming down on me for sharing what they’ve put me through, so I avoid naming names. So often “we’re here to help you” turns into “we’re here to help you feel hopeless”.

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7 Responses to “We’re here to help you (feel hopeless)”

  1. Carters says:

    Hi Linda, your post is just unbelievable! I cannot believe that the organisation treats people the way you describe. I am horrifed and disgusted!

    I completely understand why you cannot name names, but oneday when you reach the point that you no longer need them, call the media, fairgo, radio whoever and whatever it takes. Keep documenting all the details of contact you have with these people – as you never know when you may be finally able to use it.

    I hope that these organisations can be called to account for the undue stress that they have caused so many parents of autistic children.

    I am so sorry that you had to go through this! Let’s hope that oneday these people can be “done away” with and the money funding them can be given to the real needs of parents like yourself.

    • Thank you for the support hon. It’s even worse than what I’ve described here. In a previous post where I talked about the person from an organisation who told me I shouldn’t have had another child – she was from the same place I’m talking about here. I have also been put through the absolute mill trying to get them to match the funding our pediatrician told us we should have been getting from them at the start – they gave us half of what we should have been getting. The people who answer their phones give contradicting answers to previous call takers, I’ve even had one of them deny that the organisation offers a special sub-type of funding which they clearly do and did, and later calls confirmed they did. There has been a news piece about how bad they are a while back, but clearly nothing has improved. I hate dealing with this organisation, but they are the only suppliers of the funding in question so I can’t avoid dealing with them unless I want to completely fore-go the funding which we do need.

  2. KDL says:

    Ironic. We went through a similar process with our daughter beginning shortly after her diagnosis. First home visit, second hair-raising visit to their office for an assessment that had already been done by two other professionals. ONLY to be told after 6 months that we were not entitled to any services because she is “too high functioning”. At the time we started our study with these people my twins were 6 months old and we were dying on the vine…literally coming apart at the seams trying to hold our family together, and still reeling from the diagnosis. By the time we got our answer we had learned a lot, the babies were older, we were doing better, though by no means out of the woods. We have done it all on our own except for what the school HAS to do, and it is sad to me. With just a little more support our first couple of years could have been much more productive and not so stressful for the rest of the family. No one takes the long view that helping these children become more independent now will help them be more independent and productive as adults later on. Why can no one except us worn out parents see this??

    • Sad but true KDL. It seems to be the common experience; I don’t tend to hear stories of how quickly the diagnosis was done, and how efficiently the help was made available. So much avoidable suffering.

  3. It looks like the whole world works more or less in the same way. Red tape, un-helpful organizations and supposed charities, confusing and confused views on what you can need… We are living the same experience here in Italy.

    • That’s sad. I hope that the next generation of newly-diagnosed autistic children can benefit from parents like us making what changes we can to the system. Sometimes all we can do is raise awareness, provide feedback, or petition for change. It is helpful in that fight for change, to know that these problems are wide-spread, and not just isolated instances in a system that is otherwise functioning well.

  4. Shannon says:

    You are not alone. Similar problems with orgX”, and untrained (sometimes rude or downright diminishing with comments)
    7 year wait for us, and I had been told last month with the new HCA, expect another 4-7!

    My advice? Do not expect help from anyone. I’ve been in this nightmare for 8 years. Once I accepted that, anything was bonus! Is it right? Newp. However, for various reasons I do not see this trend of “starving us” until we scream ending anytime soon. Trust me, I am by nature an optimist. Reality had to finally set in. I thank God my child is one that gets ‘better’. My child has had only speech Thearpy. Everything else comes from pushing into situations to desensitize, and consistancy. It’s hard. I have no support system.

    Yes. I will tell you the more you complain, the more you experience “issues”. With no checks and balances, and these government offices lining up – welcome to being a “number” with a rating. 😦

    This is not the world I once thought it was. It breaks my heart to see someone sent through this extremely demeaning process without understanding what they are up against. You are not crazy, and certainly not alone. I wish by now I could give you a straight, honest answer, but the only word that comes to mind is politics. Hang in there and NEVER let anyone tell you who you or your child is.

    NOTE: Just FYI; “orgX” has traditionally been for adult assistance. Children with Autism is a new concept to these workers.

    Where I am, every “agency” even those who boast advocacy are connected. This includes the educational system. You are right to be cautious!!!

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