Minneapolis school district held today its annually autism resource and information event in Confederation Somali Community of Minnesota center in Brian Coyle.
Blog Archives
Minneapolis School holds Autism Resource and Information Event
What can Rep. Liebling learn from IACC?
Autism Coverage for only Middle/Upper class kids crawls from HHS
SF314 Authored by Senator Eaton of Brooklyn Center which has lots of West African and other minorities is heard today in Health, Human Services & Housing in Minnesota Senate.
Invited to World Autism Awareness Day @ United Nations 4/2/2013
What a remarkable journey – I had with autism. When my son was first diagnosed, I could not even say the word out-loud for six months. I went into denial, shame and stigma for a long time to the point of taking him to Wisconsin for a play ground and avoiding everyone I knew.
Autism Policy/Politics in Minnesota; The Good, The Bad and The Ugly
Let’s start with the Good. Remember back in April 2011 – there was a front page article on Minneapolis Star Tribune titled (Double Standard).
Why Does Autism Health Disparity Exist in Minnesota – in 2 words; Elected Officials.
MN Autism Coverage HF181 advances to HHS Finance Committee – Still Discriminatory Language
only help children with private insurance and leaves-out children with
Medicaid/MA scheduled in HHS Finance Committee in Minn House of Reps.
The language of
this legislation is still discriminatory and will create double standard and
here is how;
Example – Two
Children with Autism both named Michael Smith.
Michael Smith A
has Private Insurance, middle/high income family most likely Caucasian.
-
He gets
unlimited hours of Autism therapy including ABA, Floor-time, etc. -
His Doctor
including the owner of the ABA Autism Center can prescribe the hours, the
intensity, the length of therapy and the duration, it can range from 2 hours a
week to 40 hours or more a week. -
He can get
this therapy from age two years old or even younger to whenever as MEDICALLY necessary, even after age 18
or 21 and older – there is no age limit in this bill for ABA therapy. He does not have any paperwork from any state agency looking, denying, questioning, or even thinking about it. The sky is not even the limit for this kid.
Michael Smith B
has Medicaid/Medical Assistance – low-income family and most likely Minority.
limited hours decided by Minnesota Dept of Human Services (DHS) medical
personnel and bureaucrats. (HSAC did not have the guts to write a concrete language that was fair and based on current actual evidence not parent anecdotal and cost effective. One would have thought research should drive policy, not in Minnesota).
early intervention, if older most likely not (keep in mind low income and
minority kids get diagnosed late to begin with. So, his start time is late
already – but who cares – really).
therapy is only medically necessary if and when DHS says
it is. And, we all know how quickly – sorry meant slow they move. More like
crawling is their pace.
at best this kid gets couple of years, maybe 3 years of late, limited and less than 20 hours a week, regulated and
less quality of therapy, and crappy coverage.
What provider in
their right mind is going to take The MA/Medicaid child who has more rules and
regulations than a boxing match between Tyson/Hollyfield, with all kinds of ears coming of and all. The rules, regulations, denials and paperwork might be as much as Dodd/Frank Act. This will happen for few years. Meanwhile, we (minorities and low income autism families) will accumulate disparity, health inequity and more barriers to equal health
care.
Then, some of the
same legislators and state agency leaders that passed this law/policy will have
the audacity to come to our communities and tell us “they care, they
understand and THEY want to decrease health disparity), but – wait for it….we
must vote for them again and like them on FB. And ask us to be really really really nice because this time things will change and we should see some light at the end of our health disparity tunnel. They will even learn couple of Somali words and other trivial gestures to make us feel welcomed.
And, they will
flash their FEEL GOOD legislations and NAACP memberships, Sort of like the
disparity decreasing legislations (HF310 and SF246) now going through MN house/senate.
Ironically many of the same legislators who are voting for the autism disparity
creating legislation also co-authored these feel good & meaningless
policies that are not even a bandage for a health disparity wound that needs an antibiotic or
even stitches.
I kid you not.
Read it and weep – some of you might regret your vote in 2012.
So, what happens
now?
1. Well, we
certainly don’t have nor can we afford the lobbyists and special interest
providers that are influencing these legislators at the Capitol.
2. Our
voices/ideas are not sought or important enough when writing these policies.
3. We can start learning and do what WA and FL states did for the double standard and different sets of autism benefits between the haves and have-nots.
4. Plus,
when there is a will – there is a way. We have the ability and the power to vote,
which is how they got there in the first place and became the hot shot committee chairs,
administrators, LA’s so on and so forth.
Therefore, we
must know our votes only matter, if we demand it to matter and use it like a
bargaining chip. In other words, we elect them to office (as little as couple
of hundred votes) and they address our important issues that matter to us,
enhance our life, better our children’s health, education and improve our
overall everything. We should not settle their usual give us a fish every other
day just to survive. We must demand and expect to learn how to fish and be part
of the process and of the system.
Insanity is
voting for the same people and somehow expecting different policies. It has not
happened for so many other minorities in this country that have been here a lot
longer. We cannot and should not think it will happen for us without really
re-thinking and having better strategies.
The only way is
with our voices, our votes and our insistence on fairness and equality from
every corner, river, valley and mountain.
Think of it this
way; In a marathon race during Olympics – all of the athletes start at the same
lane and the fastest and best wins the race. May the best man/woman win –
right.
our kids start with late or mis-diagnoses,
late or less intervention and services. So, how can they possibly ever win or
have a fair shake when the starting point is never leveled or the same. Think
about that! That is why and how health disparity happens, stays persistence and
will never be eliminated. The same people whose policies created this crap are
still in power and we keep re-hiring them. Ask yourself why, only you can
answer and change that.
Can Autism Speaks Stop Imposing their views on All of US
First, let me clearly say that this blog is only about the services especially the private insurance mandates or government affairs in Autism Speaks.
CAA (what does it do and how does it help Autism
Combat Autism Act of 2006 by President Bush and reauthorized in 2011 by President Obama is suppose to fund autism research, services and resources. This includes many areas, such as funding the InterAgancy Autism Coordinating Committee (IACC), funding the Leadership in Neuro – Development & Disability (LEND) fellowship which now funds 43 universities across the United States, Fund parent to parent agencies in almost all of the states for parent awareness and education on autism’s signs and symptoms. It also funds the Autism Development Disability Monitoring Surveillance System (ADDM) through CDC (Center for Disease Control) to name just few of the programs it should do.
Autism Discriminatory Coverage Bill Passes MN House Commerce Committee
HF181
which only wants to help children with autism that have private insurance with
unlimited, untested fully and costly passed the House Commerce Committee
chaired by Rep Atkins.
I signed up to
testify against this bill and was the only Black/Minority person, not a shock.
I should get used to this by now. First, Author of the bill Rep. Norton gave a diluted version of the
legislation stating Medicaid pays for ABA already for low-income families,
despite the fact that it does not because MN DHS does NOT have the authority to cover ABA by CMS. But, no one from the Committee
questioned this or asked DHS folks who were there.
Then we heard
from two Caucasian parents who gave their take of the bill and how CMS, NIMH,
and other Federal agencies recommend it. I am sorry, but as the only one from
Minnesota in the Federal autism committee – that is really false. Again, no one
verified or checked IACC’s autism website or U.S. HHS’s site for autism
which has the latest national autism plan. Recent research stated at best
modest results of up to 25 hours including parent training and not unlimited
hours that can cost up to $100,000 per kid per year. There are about 17,000
kids with autism in Minn – you do the math. In addition, the Chair and overall
the committee were engaging, friendly, sympathetic and gave them an ample time
to make their case.
Then, they call
my name and after speaking for two minutes, Chair Atkins cuts me off and reminds me my limited
time. There was no engagement, listening or any real interest in my testimony.
Nor did they have any questions or comments about it. Business as usual.
It felt like I
was in Alabama in the 1950’s in Gov Wallace’s committee, except this was 2013 and in
Minn in a leadership that won as little as few hundred votes in districts that
have thousands of minorities. They were overall cold, distant and could care
less about the lack of evidence for the bill, the high cost with no check and
balance or excluding low income families who are mostly minority autism
families.
My favorite line is when they say;
I care about
disparities because I have been working on it for decades. Clearly whatever you
have been doing is not working, given that Minn is at the bottom of the pit of
health disparity including autism.
My family member
is a minority. Sen. Thurmond also had an African American Daughter,
yet voted against all major civil rights policies.
My best friend is
Black, only if I had a penny every-time I heard that.
I understand your
anger (except when Caucasians do it, its called frustration – us, we are
angry). Somehow these policy makers don’t seem to think their policies have
created disparity in autism. In other words, we should take whatever leftover
they give us, process it, digest it, like it and thank them for it.
Great! Your votes
at work.
Thanks!