Over the last eleven years, it feels like we've had a lot of doors slammed in our faces. There are tons of places that promise to help families with special needs and yet it seems as if we somehow keep falling into exemptions.
Love to help, but your family earns too much money. (This is the most popular one)
I'm afraid that we only support families who are currently receiving full-time IBI for two or more children.
That sounds like a rough situation, but we only support single-parent families.
We only help if families in significant arrears on their mortgage or utilities.
If you're still managing to work, you're not in crisis.
I know we had a two-year waitlist but because you did private services, you can't qualify for help with us.
And today, the meeting with Service Coordination about applying for crisis funding: apparently we're not crisis-y enough and while they might be able to shell out funding for me to hire a therapist to come to the home**, they will not support funding a housekeeper so that I can concentrate on helping Alex and Nathan. They said we had too much of a support network already in place for the boys to qualify as being in crisis.
I know why. It's because the people who assign/donate the money would assume that the parents weren't doing the work and were simply laughing it up at the government/donator's expense. Because a parent can't possibly be honest or helpful.
Here's the thing. Our family has always been fiscally responsible. When Dave and I were looking to buy a house, we spent five years saving a significant down payment. We had a plan which likely would have seen us mortgage-free at fifteen years. We saved to buy our cars rather than debt-financing them. And then the diagnoses hit.
We pulled money from our equity to cover therapy because our income was "too high". We lowered our monthly mortgage payments to the minimum to cover the costs of full-time aides. We swallowed our pride and accepted financial help from friends and family because every single service we looked at turned us down because we were too responsible.
If we'd lived above our means and had half-a-million in debt, we'd qualify for help. If I'd divorced my husband, we'd qualify for help. If one of us was addicted to drugs, or we were under investigation by CAS or any of a dozen other horrible things, we'd qualify for help. But apparently, no one wants to help someone who has tried to do the right thing all along, but gotten hit by difficult circumstances and who needs temporary help to get things back into a place where we can cope. That's just not a "sexy" situation to support.
I am really tired of getting hit with the "it's not bad enough" tune. I don't ask for help often. The last time was when Dave had cancer and was going to be kept in isolation for several weeks. And I asked for short term funding to help cover the costs of the extra hours I was going to have to ask the aides to work. And we got the same damn message then.
I'm not looking to play the system or get stuff I'm not entitled to. I'm looking for help so that the hole can stop getting deeper. I'm not even asking for help crawling out of the hole. I just want to keep it from plunging to the next horrible level. But that's not good enough because apparently, I've tried too hard on my own.
** A note on the practicality of hiring a therapist vs a housekeeper. A trained therapist would be $ 60-70 per hour and take a minimum of 3 months to set up, assuming I found one which was available today. A respite worker would be $25-$30 per hour, require 4-5 hours daily to cover the necessary time and would take a minimum of 6-8 weeks to train in the proper protocols, again, assuming I could find anyone. The housekeeper will be $20-25 per hour, require 6 hours per week to manage the necessary work, and can start helping almost immediately. Oh, and additional fun fact: I would need to have the therapist ready to go and committed to, but they won't guarantee or commit to any funding. Not cool, people.