Well I got a phone call this morning and it’s official. Our local Early Intervention program is going to cut Parker’s physical therapy sessions back. Way back. Reed and I are simply incredulous. Finally Parker has the energy to put into learning to crawl and NOW they decide to cut back his therapies. The paper I got stated the reason as “Parker’s doing better.” Uh…hello? Parker will turn two in November, still can’t go in and out of a sit on his own, can’t push through his arms, and can’t crawl and for the 3rd month now still weighs less than 17 pounds. But according to EI he is ‘doing better.’ Pardon me a moment while I go and bang my head against the wall.
I realize that a EI’s main goal is to teach the parent how to provide the therapy. And provide therapy I do. But the bottom line is that I am NOT a physical therapist and Parker needs more help. His health issues have taken a large toll on his gross motor skills. There is no room in our budget for private therapies. I have tightened our financial belt to where we are turning blue and applied every tighwad strategy I know, and the money simply isn’t there.
I have a schedule that reminds me what time we work on physical therapy, what time we work on feeding issues, what times we work on cognitive issues. This same schedule reminds me of the 5 times a day that I need to stop and administer oral meds as well as make sure that the 6 bottles of Pediasure with microlipids have been downed. On good days I can sneak in a shower. And to be honest, being as homebound as I am can really mess with your emotions. It’s hard. Very worth it, but hard.
Housework for me gets done after 8:30 when my younger kids and Parker are in bed. Laundry, ironing? Well they are done during the 10:00 news…….and long after. Going to be by midnight is early for me. But bathrooms still need to be scrubbed, my other kids still need clean underwear, and lunches made don’t make themselves. And with the increased price of school lunches, home lunches are the only way to go.
I am angry as to how services in this state are set up. Everything goes by your income. At first glance this may seem logical. But dig a little deeper and the descrepancies are glaring. A family may bring in less money than our family does, and because that family brings in less gross income, they receive services……and we don’t. But if you were to look at how much out of pocket expenses we are responsible for our family is actually LIVING on much less than the other family. Because Utah goes strictly by incoming……..not outgoing monies. Then when you look at the amount of taxes we pay into a system that we are constantly denied by, the picture gets even more frustrating. We are living on less than other families that are receiving services while paying more for the same services that we don’t qualify for.
Now I would never want any child denied services when they need them. I guess that I am just really frustrated that there isn’t enough to go around to all the kids that have need of them.
Then there are the several thousand dollars that Reed will lose in pay this year, but that is a topic for another day. Momma’s don’t let your babies grow up to be educators. At least not in Utah.
This experience with trying to get help for Parker has made a real impression on how I look at a lot of things. It will play a major role in how I choose to vote during the next elections. And while I am sure that nobody will mourn the loss of just one little vote, it will make me feel that if only for a second, I have a little control in these matters.
And that feeling sure trumps the feelings I have when we receive yet one more denial of services slip.
My heart is weary from so much worring about how to get the help for Parker and how to pay for it all…….on top of all the other medical bills These phones may not be mobile; for example, they may require student nursing loans power supply, they may require the assistance of a human operator to set up a PSTN phone call. * SMAF: Yamaha music format that combines MIDI with instrument sound data (aka Module files). The first SMS text message was sent from after bankruptcy loans to a after bankruptcy loans in 1992 in the UK, while the first person-to-person SMS from phone to phone was sent in Finland in 1993. A working group made up of Finnish telephone companies, public transport operators and communications authorities has launched percent 125 loan mortgages home to remind percent 125 loan mortgages home users of courtesy, especially when using mass transitâ€â€what to talk about on the phone, and how to. This Railfone found on some Amtrak trains in North America uses cellular technology. 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Hi Tammy,
I am so glad you stopped by my blog. Thanks for leaving a sweet comment. I can feel your frustration. Even from a distance, none of these government programs seems fair to me. I don’t know what I can do to help except to offer you my prayers. I know how weary you must be. My heart aches for you. Be assured you are in my prayers. God has a way of doing the impossible. Be sure to share these things with folks in your church. I haven’t had a chance to read all your posts and get caught up, so forgive me if I’m saying things that have already been said a hundred times. Our instinct is always to want to be of real tangible help and minimize the power of prayer. I believe God knows all about this, and He can make a way. I send you love and prayers.
Hey Tammy-
I know it sucks but the funding just isn’t there. Right now Baby Watch Early Intervention is trying to get on the govenors budget for the full amount that they are asking. (2.6 million) Last year they asked for 2.3 and only got 675,300 and federal funding also decreased about 60,000. Services just keep dropping for everyone. If you want to get involved, I know that Dr. Sundwall is taking emails. I can send you the info if you want. Who knows if it will actually work but at least we can say we tried.
Sun
Oh Tammy that just makes me sick to my stomache! I can’t believe they are going to drop his services, espcially now that he’s healthy enough to participate more! And how dare they say because he’s “doing better!” What?!? I can’t believe your EI center works that way. My understanding is anytime a change is made in services it has to be documented on an IFSP and you have to agree to it – if you don’t agree I don’t see how they can drop his services! I feel your frustration and I’m so sorry!
Oh Tammy…I am so sorry. It sounds good on paper, but it’s not all that it seems. They cut Jack out of OT and PT also once we moved to Florida, and I feel that it was because they just didn’t want to mess with him. Honestly, I didn’t see that they were helping anyway. Once we are settled back in Arkansas I feel like he’ll qualify for OT and PT again. And the center he was at…unbelievable how wonderful they were. Who would have thought podunk Arkansas could meet needs like they did and Florida would be so different. It seems like Parker could benefit so much from all of these. I hope they see that and rethink their decision. It’s like a slap in the face everytime you round a corner.
Still praying for Parker. He just melts my heart everytime I see his pictures. Jack has seen his pictures too and says, “Awwww, baby!”
(ooops! Got cut off…)
Jack sees his pictures and says, “Awwww, baby!”
Tammy- I’m so very sorry that the services for Parker are being scaled down. You have every right to feel frustrated, I know I would! You’re such a great mother and I know you’ll leave no stone unturned in trying to get the appropriate amount of assistance for him. Hang in there.
By the way, thanks for your comment on my On the road again post! I’ve made it safe and sound to Las Vegas, after an hour and a half delay in the airport due to a rain storm. Ugh!
Oh Tammy, I’m so sorry that your EI people are doing this to you guys! That’s awful! I’m so grateful that Connecticut has good programs for Joey. You guys are always in our prayers!
Oh honey, that is so not right! Can you appeal? If anyone has a case it would be you. That is ridiculous! Prayers for a resolution. and HUGS HUGS HUGS, I hope you can feel me squeezing you tight. You deserve so much support and love and I wish I was closer to give it to you in person!
I am happy to read parker is getting stronger. It really sucks about the services. I have the same issues here nothing is covered and I have to go private so Tristan is just going without because I can’t afford them. I hope you can figure out a way to get him what he needs. Maybe you can appeal or something.
Oh Tammy, you sound so discouraged. It’s so unfair. You have to wonder who on earth makes these decisions. My mother and I were talking just yesterday about how businessmen in suits sit behind desks and tell our doctors (HMO doctors) what kind of medical treatment we need. It’s ridiculous and I don’t blame you for being frustrated. And tired. I so hope you find other resources to help you and Parker.
So sorry to hear what you are going through. I will be praying for you.
That bites. I hopw youcan fight it successfully. When I come into my millions I’ll send you a few. (sigh)
Tammy – so sorry about this – hopefully talking to some of the uppers at EI will help… Parker is always in our thoughts and prayers!
Tammy, Have you thought about going to the Y or the U for pt, ot, st? When I was thinking about getting my master’s degree in speech pathology, the U had a clinic for the students to get practice in the clinical work, etc. Just a thought. I hope things work out next leg. session. It made me mad that during the special session last spring the legislature approve money for a parking structure at the capitol bldg, but no money for dental services for medicaid/medicare. What was up with that?