Remember – when big wall street banks were too big to fail even though they mis-managed their resources. And, the little guy had to pull them up.
Well, the same can be said for many so called big autism advocacy agencies. They are too big and therefore should hog the resources regardless of their outcome. They can have mediocre record of results in reaching-out to autism families. They can do meaningless webinars for families that don’t even own computers or have access to the internet. Yet, they have to hog the resources because they are too big to not hog it.
The little agency that could never does because it gets swallowed by these too big to fail autism agencies. I am always told by state and federal agencies who keep funding them – they are big and have the infrastructure to get funding. And, that is why we fund them. Now what now?
So, if these big agencies don’t have to produce results or numbers, yet keep getting the same funding – why should they change their policies? Isn’t that a good question. I wonder if WCCO channel 4’s good question reporter will explore more here.
Another area is the child and maternal health block grants that go out to state health departments with no questions, measurable results, change, reservation or even a thought. In other words, no matter what any state’s child and maternal health department does or does not do – they get millions of dollars from the federal agency of HRSA. So, why can’t HRSA or other US HHS departments set funding guidelines in a way that holds them accountable to their diversity, outreach or disparity reduction record? Well, no one seems to know but of course everyone cares, just not enough to make a change in funding policy.
Another one is these grants/funding that are for family to family which basically means such agency that has this funding stream must educate families across states about autism and other disabilities. For example, Pacer (one of those too big to not get it) has this and they do hundreds of “webinars” that usually never reach low income or minority families because they don’t have access to computers, understand what the heck a webinar is or don’t have internet. I went to one of their workshops and they were teaching mostly non-minority parents how to advocate for their child, how to tell their child’s story, how to befriend their child’s teacher and even how to talk to an elected official. Can you believe that – here in minority-ville – all we know is how to hide our child and never tell their story. And, when I asked one of their reps if they had any plans of doing similar workshops in south or north Minneapolis or even rural Minnesota specific for minority autism families, I was told and I quote “we just don’t have time for that kind of thing – quite frankly”.
Now what now? She seemed to be confused by my question and had no plan of changing their way of never reaching out to our communities.
Here is my advice for any federal health agency that funds these too big to fail:
1. Every grantee must have a real measurable plan with an end goal of reaching-out to minority and rural communities.
2. They must partner & share the resources with minority and rural based organizations.
3. They must have language lines for those that don’t speak English and follow the civil rights title 6 guidelines.
4. There must be a way to measure success and have a short and a long term plan of reducing disparity with real numbers and facts – not we care or we are nice words crap.
5. And, finally – there must be diverse staff in these agencies with a saying power that reflect the communities they get funded to serve.
6. Plus the acknowledgement that disparity comes from racist policies whether they are intentional or unintentional, one never really knows. Pretending racism and bias policies don’t exist is not the answer. We need to talk through it and address it with action, not pandering meaningless words.
If above policy changes are started and implemented – then good change can only come from them. I really hope that US HHS guidelines change because clearly states have no desire to change their business as usual policies that have created this disparity in the first place. Hogging federal and state resources with no improvement or progress is stupid and silly.
Thanks!
Idil – Somali Autism Mom & Minority Advocate.