This week flew, I feel like I just woke up Monday morning exhausted from a crazy week before and it is friday already. I am not sure where the days went…..it was good but this weekend is shaping up to be fantastic.
My hubby loves him some pure Michigan. We had a meeting there tonight and we took advantage of our friends beach. We made it just in time for the show…..Don’t you agree!!!!
The beautiful sunset where the sun begins to fall and it is soft and shimmery. It casts its glow on the water and looks like millions of diamonds floating in the distance. It takes us a good hour to get there so the boys as well as Grace needed to work their wiggles out. It was perfect…..
There is just something about stepping out of your Monday through Friday routine and changing things up. My husband is the first one to say lets go. Lets go somewhere even if it is only for an hour, lets go. Each year it gets easier for us to pick up and go. I loved the years of having 4 toddlers under the age of 5 but I must say this is a nice transition. The big boys can help and the little boys can follow directions so after throwing the suits in the truck I ran them around little red school house, we picked up Dad and we were off…… Road trip! We are now back home the kiddies are in their beds sleeping and we are looking forward to a fire outside. That makes me happy….
It was a perfect beginning to our Fathers Day weekend.
This Friday I would like to spend sometime talking about something that affects a lot of Illinois families. This is important stuff, stuff we all should be aware of and advocate for not only our own children but hunderds of others. These changes in government are not always made correctly, our representatives and our Govenor need to know what affects this has on our families. I hope you find this as informative as I did.
Just yesterday (Thursday, June 14), Governor Quinn signed a new Medicaid law that has profound implications for every child with a disability in Illinois. Before this law was signed, all children with significant disabilities in Illinois were guaranteed in-home services if they needed them to avoid having to live in a hospital, nursing home, or institution. This new law—which is called the SMART Act but is not really very smart—takes away this guarantee. Illinois no longer guarantees kids with disabilities have a choice to live at home with their families.
Why was this done? The reason is simple. Illinois bureaucrats decided that they were spending too much money on kids who receive home nursing care through the Medically Fragile Technology Dependent (MFTD) Waiver. These kids have ventilators, tracheostomies, and central IV lines. They are the most vulnerable children in the state with the highest levels of medical complexity. But these bureaucrats determined that these kids are too expensive, and in order to save money (on paper), they decided Illinois would become the first state in the country to cut off middle class families from this type of program. In order to cut these kids out of the program, the Illinois legislature had to eliminate the law that guaranteed all children access to in-home care.
Children will now lose their home nursing because their families earn too much, and many of them will be forced to live in hospitals—permanently—at three times the cost. By the way, the state is cutting off families who would have to pay more than double their annual income to keep their kids at home. These are middle class families.
Even more frightening is that Illinois is trying to make the most fragile, most complicated, and most expensive children ineligible for the MFTD Waiver by restricting the program to children who could live in a nursing home. 99% of the kids currently in the program are considered too fragile to live in a nursing home, and would no longer be eligible for the program because they are too expensive and too medically fragile. You read that right—Illinois does not want them in the program because they cost too much and have too many needs. Hundreds of kids could lose their home nursing care and end up living in the hospital forever.
And while the MFTD Waiver has been the target this year, all in-home programs for children are threatened. Without that guarantee of in-home services, children with autism and developmental disabilities who participate in the Children’s Support or Residential Waivers may be the next to lose their programs.
Here are just a few of the kids who will be affected by these changes:
This is Michelle. Michelle is diagnosed with Hallerman-Streiff Syndrome, a craniofacial syndrome that causes her to be legally blind, hearing impaired, of short stature, and require a tracheostomy and ventilator to breathe. Michelle is also a pianist, dancer, and good student who is thinking of becoming a doctor or teacher. Even though Michelle’s family is struggling financially, the state thinks they make too much money to need a program like the MFTD Waiver. Incidentally, the cost of Michelle’s home nursing care is more than their annual income. She will no longer be eligible for the program. Michelle would also be disqualified for needing a hospital level of care and costing too much each month.
This is Kira. Kira is an honor student in a regular classroom and just finished the second grade. She loves animals and going to the zoo. She is just a regular kid who happens to have a rare disease called ROHHAD, and needs a tracheostomy and ventilator to breathe. Kira’s family is right on the borderline of being disqualified by income. Her father may have to stop participating in our Armed Forces Reserves in order to qualify for the program. Kira also would be disqualified for needing a hospital level of care.
This is Letty. Letty has a rare muscle disease called CFTD and needs a ventilator to breathe. Letty is adorable and precocious—she could read when she was 2.5—even though she can’t talk due to her disorder. Letty’s disorder typically improves over time, but if she is living in a hospital, there is no way she will ever meet her full potential. Letty’s family will continue to qualify by income, but they will struggle to find the money to pay the new exorbitant copays the state plans to add to this program. In addition, she would be disqualified for needing a hospital level of care and costing too much each month.
Could you send these kids to the hospital?
To find out more about these kids and their battle to live at home, visit www.SaveMFTDWaiver.com.
