When I first began blogging, my goal was to show the world that life with an extra chromosome truly is worth living.
IÂ shocked at the number (up to 90%) of terminations sought after a new mother was given a prenatal diagnosis of Down syndrome.
One of the reasons a new mother may choose abortion is the fear of herÂ inability to pay for any potential medical issues a child with Ds often brings with him.
I wanted to show that even a kid with Down syndrome who had all kinds of health issues could live a happy and productive life. I mean how many of you had heard the words imperforate anus before meeting Parker?
Yeah. Me neither.
As time went on, and providing Parker with the medical care he needed became harder and harder, my focus changed a bit. I knew that if we had depleted our savings and racked up our credit cards trying to keep our child alive within the system, there were others out there doing it as well.
Then I met those who simply couldn’t believe that this could be happening to a kid right here in America. Because in America we have safety nets. We have Medicaid. And we have charities and Pennies by the Inch and The Children’s Medical Network to address all this stuff, right?
Uh. Not exactly.
It’s kinda like the Easter Bunny. Everyone feels all warm in fuzzy believing in him. Then reality hits as circumstances beyond your control dictate that you come face to face with the realization that there is no Easter Bunny for medically fragile kids with special needs born into middle class families, especially.
It took Parker being trached, requiring to be vented while sleeping, a g-tube, and all kinds of medications to finally make the Travis C. Waiver.
For 3.5 years we did it the way Representative Dougall has suggested. We sought out the help of friends, neighbors and charities.
We stuck our self respect and dignity in our back pockets and put ourselves out there for the sake of our very sick kid.
Interestingly,Â I first met my Representative at a fund raiser for Parker where this politician was pandering for Reed’s vote. Standing right in front of all the signs about Parker, as we were trying to raise funds to keep him alive, this wanna be legislator talked so much and for so long that Reed was unable to explain to those interested how to participate in our fund raiser A couple of years later this same Legislator looked me in the eye and told me that he ‘didn’t recall that.”.
We racked up all kinds of debt on our credit cards and almost lost our home in our attempt to keep Parker alive without Medicaid and hoping for the charity of family, friends and corporations.
Representative Dougall and I have had many conversations about Medicaid and Medicaid waivers. At first I trusted him to represent Parker. But as time as gone on my trust has not only wavered, but disappeared.
It’s not that I think the one holding this office is a bad guy. I just think he has no idea what he is doing in the area of Medicaid reform.Â (For the record, I do believe Medicaid needs to be reformed.)Â And I think he has chosen to ride the latest trend that demands a government so small that the lives of it’s most vulnerable are at risk.
I’m sure that there are legislators thinking that riding this particular trend may bode well for a future bid for a seat in Washington.Â Â They just may be surprised that not all of Utah agrees with social infrastructure and safety nets being unconstitutional, evil, and a direct misuse of the constitution as God intended it to be.
The face of a constituent from District 27.
Recently, our friend, Erin, who is known as @QueenofSpain on Twitter got in touch with Rep. Dougall in regards to a few of my concerns. Here is what Representative Dougall had to say:
I donâ€™t recall ever making a statement about a BBQ but I know that she uses that example regularly in response to comments about increasing community involvement and reducing federal involvement. I donâ€™t know whether other legislators with whom she has corresponded have made that statement.
Last I recall I was still waiting to hear back from Mrs Hodson the name of the individual who said that her son was going to be dropped from the Medicaid waiver. Because of patient confidentiality, I have no access to records or information regarding the medical advice or specific statements she is given regarding her sonâ€™s status on the waiver. I do know that we are trying to cut areas of the budget so that state government can still provide services to those most vulnerable within society. It continues to be a very difficult task because of the many entrenched special interests.
Please, Rep. Dougall. Surely you can do better than ‘I don’t recall’.Â Â Â Is that because you’ve handed out this same suggestion to families of kids with special needs so many times that you no longer remember who they are?
In a recent telephone conversation with Steve Baugh, who is running for the Utah Legislature, I didn’t even have to explain what I meant when I mentioned the phrase “Hosting a BBQ”. Mr. Baugh knew exactly what I meant and spoke of how many times this phrase is now being toted as being a great replacement for Medicaid by many in position of local and state government.
While Rep. Dougall may not be the only one using this phrase, he does indeed use it.
I offered Rep. Dougall the opportunity to put his theory into play by fund raising for Parker. Rep. Dougall could prove to the state (think of all the great publicity) that his plan could indeed decrease the need of Medicaid waivers in Utah.
Rep. Dougall accepted my challenge
Unfortunately I’ve yet to hear back from him with a plan.
Color me surprised.
I’ve tried to explain to my local Representative that I simply don’t believe that community charity will work for kids like Parker. Communities and churches can only do so much, which is why Medicaid is needed.Â I’ve suggested that before he make cuts that would affect Medicaid waivers, perhaps he should put these charitable new safety nets in place first.
Recently Rep. Dougall voted to cut 2 Million dollars from those who need it most.
Unfortunately, Rep. Dougall isn’t really good at standing up and taking the heat for the his own decisions, as this opinion piece by Andrew Graft portrays.
As Andrew writes, The public record is clear that Ormsby (state director of DSPD) repeatedly solicited input from, and offered options to, Dougall, other legislators and the disabled community on how to make the best of this bad situation.
For Dougall to suggest otherwise â€” now that the heat is on â€” is disingenuous and shameless political blame-shifting.
Mr. Graft is referring to is how Rep. Dougall shifted the blame for the effects of his legislative cuts directly onto Mr. Ormsby.
(For the record, I spoke with Dougall, Graft and Alan Ormsby, the state director of the Division of Services for People with Disabilities, even going as far as having Alan talk me through his budget. My vote is firmly with Ormsby.)
Mr. Representative, after making this 2 million dollar cut (more when you consider how much less federal funds Utah will now receive) what have you to done to insure more charitable community giving? **
You’ve reduced the Federal footprint on Utah’s Medicaid Waivers, but what have you done to increase the charitable giving you have continuously insisted would take it’s place?
Instead, you’ve allowed, for the first time ever, kids who are trached to lose their spots on the Medicaid waiver without putting an iota of time into your very own theory.
No, Representative Dougall, I haven’t given you the name of Parker’s Medicaid caseworker. I have told you that she was the one to share this information about Parker’s potential future status with me though….not just once, but twice.
I explained to you that while Parker made the waiver for 2011, his odds of not making it for 2012 have grown, and will continue to grow if you continue to take a shotgun approach to Medicaid Waiver cuts. Especially as you did during the 2010 session.Â I also told you that she suggested we start NOW looking into what it would cost to outfit Parker with all of the durable Medical equipment he now uses.Â Like his vent.Â His trach mask set up.Â His ability to refill oxygen bottles.
But giving you her name makes me nervous.
I’ve seen what you do to others, including Reed, when somebody doesn’t do something your way. The gross misuse of your political power in the situation with my husband amounted to nothing more than a spoiled tantrum.
What did THAT
tantrum legislation cost the taxpayers of Utah?
It would take all of 2 minutes for Representative Dougall to call the TPTB at DSPD and ask, “So, what are the chances of a trached and vented kid keeping his place on the Medicaid waiver if I, once again, cut two million from your state budget along with the other millions from the Federal budget?
* I could choose to now as the time to point out that Utah had the opportunity to secure 4x matched Federal funds during one of the last budget meetings. Instead, at the 11th hour, Representative Dougall pulled the plug on this budgetary inclusion for no other reason than he as well as others on the state legislature has a philosophical opposition to the existence of government.
But that is a story for another day.