celebration and disbelief.

Feb 24, 2009

first the good news, claire finished her entire bottle for the first time ever! she has been making great progress eating by herself and we are very optimistic that she will one day be free of the icky feeding tube. she is still loving solid foods as well and is a huge fan of peas. go claire!

the bad news is what is going on in our state. arizona has somehow decided that is acceptable to cut funding for the early intervention program. what this means is claire’s feeding, physical and vision therapies will no longer be paid for. i am in utter shock that of all things the state could cut back on, they deemed innocent babies with disabilities as not worth the cost. it makes no sense fiscally or morally. early intervention helps many babies overcome delays so that they can avoid special education and even more costly services as they age. by cutting these necessary programs, the state is only creating a situation where older children will need more state services b/c they didn’t get the help they needed during the most important beginning stages of life. morally i am at a loss of even what to say. the fact that lawmakers in our current society could have such a disregard for the most vulnerable people in our state is pure horror to me. some people may ask “well what did parents do before the state paid for these things?’ that just shows complete ignorance to the history of how people with disabilities have been treated in our country. they used to TAKE your baby, send them away to an INSTITUTION and tell you to FORGET about them. we pay taxes just like any other family so your kids can go to public schools, you can ride a nice light rail system to work and if you get injured there is money there to help support your family. in the same way, babies with disabilities NEED therapies to have any chance at acquiring skills that most parents take for granted. i am not complaining that my baby may not get the cream of the crop education so she can become some scholar here. i am pleading for the chance for my BABY to learn to hold her own head, eat on her own, and use her eyesight for goodness sake. the fact that the state now thinks those kind of basic life skills are not worth it for my child to attain sickens me beyond belief. i cannot even imagine how a single mom on a low income with three other kids at home would even survive having therapy taken away from her baby with special needs. adrian and i have the opportunity to have a good income, have me stay at home and have the knowledge to implement therapy interventions with claire on our own if there is no way to keep paying her therapists for their work. i am so thankful for that but i am crying with the thousands of families who do not have those opportunities. i am sending my letter to our state representative to tell them of my outrage and have my voice heard. i encourage you to do the same.

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14 comments | leave a comment

  1. Kavita
    February 24th, 2009 at 10:17 pm #

    I 100% agree with you Nikky. Absolutely. I wrote a letter myself today through a website that Steve sent me. I’m so sorry that Claire’s services are getting cut. I can’t believe how it is effecting so many people I know. It’s ridiculous. They’re setting the stage for an even bigger problem in the future. Idiocracy!

  2. Jennifer
    February 24th, 2009 at 10:40 pm #

    Nicky,
    I am totally sad by this news along with all of the other cuts they are making to special needs kids (older than 3) in regards to reimbursement for therapies. The center Will goes to is in danger of closing based on the fee reductions that will be coming March 1st. Parents have to speak out. I know you are already advocating for Clarie and will continue to as she grows up. It is so frusterating. You are 100% right that early intervention makes a huge difference for our kids.

  3. ryan guard
    February 24th, 2009 at 11:33 pm #

    This is heartbreaking and infuriating at the same time. You might want to consider posting a template of your letter on your blog, along with the contact information for the state representative that should receive them. That would make it a lot easier for people to join your efforts.

  4. lindsay guard
    February 25th, 2009 at 12:10 am #

    Hey Nicky, do you know if there is a name for the bill passed to cut this funding? I don’t know if I can be of any help but I did work for Congressman John Shadegg. I know this is a state issue but I still have contacts there that could maybe enlighten me more about what is going on and who would be the most effective person to be contacting. Keep writing your legislator, if you find anyone to call don’t wait for them to call you back, keep calling 🙂 Just my experience!

  5. Jennifer
    February 25th, 2009 at 6:44 am #

    Nicky,
    I’m a friend of Matt’s and when I asked how his niece was doing, he told me to look at your blog. 🙂 I’m so sorry to hear about the funding cuts and how they are affecting you! Being in special education, I understand how much early intervention can help, and I’ll write a letter to the state as well. It’s just not right. I see so many kids on a daily basis that would have been so much better off had they had services at such a young age. I will definitely keep you guys in my prayers.

    Jennifer Walter

  6. Amber
    February 25th, 2009 at 8:02 am #

    Nicky, I doubt a letter from me would do any good since I’m no longer living in AZ but it’s very troubling to hear about the cuts. I know how much Claire has benefit from the services provided by the programs that are being cut and you make very excellent points about how this will affect all of the other kids who’s parents don’t have the means. I applaud you for speaking out. *hugs for you & Claire* -Amber

  7. Sara Eeds
    February 25th, 2009 at 12:48 pm #

    I think Ryan’s idea about posting a template for your letter is a great idea. Sometimes it’s hard for others to know exactly what should be in the letter and that would be a tremendous help!!!! Lucky for Claire she has an amazing Mommy and Daddy!!!!

  8. liz o.
    February 26th, 2009 at 9:38 pm #

    Nicole – The cuts are ridiculous! They are wanting to cut the birth to 3 program in our state too. I just can’t believe what they are thinking. You are a wonderful voice for your baby girl and so many other children out there. I am sure your posts will encourage others to get involved.

  9. Stacy
    March 2nd, 2009 at 6:43 pm #

    I work in early intervention in Phoenix, and I’ve been blogging about this too. Don’t give up hope- we’re not out of it yet!

  10. Garsy
    March 2nd, 2009 at 9:14 pm #

    I found your blog via Stacy’s blog. I work with elementary aged children in the state of Indiana and have previously worked with disabled teens and adults. The thought of this happening to these children and their families and those that provide these services is heartbreaking.

    I can’t believe the ignorance of some folks. Institutionalizing the disabled is actually more costly in the long run. Having worked with institutionalized disabled adults for several years I can tell you that AZ is making a terrible mistake if they go through with this. EARLY INTERVENTION is KEY.

    I will continue to pray – Clarie is adorable! I see so much potential! Just your presences and love is going to make a huge difference in her life! Don’t forget that!

    Blessings,

    Garsy

  11. Michelle
    March 4th, 2009 at 10:23 am #

    It was so wonderful seeing you on Tuesday! I love the ladybug costume Claire wore for Halloween. She is adorable. Your family is in our thoughts and prayers.

  12. Michelle
    March 4th, 2009 at 10:24 am #

    Have fun in Vegas. I can’t wait to hear all about your trip.

  13. Shanan
    March 5th, 2009 at 8:25 pm #

    Well said! Please encourage everyone you know (many people have no idea this is happening) to write a letter to the governor asking her to re-instate birth to 3 services. I also have info on a class action suit that has been filed if you want the info.

  14. Shelly Ivy
    March 19th, 2009 at 5:23 pm #

    I am SO going to write a letter! Well said in your comments Nicky! I hope something gets done with all the new funding that is supposedly coming the way of AZ… start a group on FB – let’s see how many people we can get in on this to make it right!!!!!!!!!!!!!

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