I don’t usually do this.
And I had to think really long and hard about how I wanted to use my blog. After all, I try to use my blog “for good” regularly by hosting fundraisers and awareness…but it’s always been directed at others. While I’ve always been transparent about our own struggles, I’ve shied away from merging the two.
But I can’t keep quiet. And I need your help. Because this is a big deal for our family.
Quick Two Second Background:
The State of California currently provides Physical Therapy and Occupational Therapy services to children who have an established NEED for it, regardless of financial status. Basically, if your kid needs therapy, you get it…no matter how much money you make. With the current budget crisis of the State, legislators are hoping to change the way the program works to only provide services to those families who have a need…AND qualify financially. This proposed change goes to vote with the state budget in July.
This sounds totally reasonable, right?
The problem is that in order to qualify for therapy services, you have to also qualify for Medi-Cal (state funded medical coverage). A family must make less than $40,000 per year in order to qualify. I don’t have to share my financial details with you to tell you that to live in the State of California, and have a family of 6, we certainly wouldn’t qualify. I also probably don’t have to tell you that a vast majority of families who receive therapy services would also not qualify under the new program structure.
So, use your private insurance to pay for therapy you bums! Right…?
Well, that’s the other problem with this picture. We do have private insurance that we pay a handsome sum for every month. That insurance is through one of the major national insurance companies, so it’s not a fly by night operation either. We don’t have bottom of the barrel coverage, so it’s not even that. Here’s the rub:
Most insurance companies only offer a total of 12 therapy visits PER YEAR. Twelve. Total. Jill currently receives Physical and Occupational therapy services to the tune of 4 sessions PER WEEK. (She also gets Speech Therapy 3xs/week, but that is under a different agency). So, even with paying for private insurance like a “good citizen”, Jill would exceed plan benefit within the first three weeks of the year.
I called our insurance company myself to find out what would happen if this budget cut took place…I wanted to know if there was any kind of plan that offered better therapy coverage or some kind of rider for people with special needs.
Nope. Nothin. Nada.
The only thing I could TRY is to file an appeal…for each and every therapy session over the initial 12. Translation: I would have to file 192 separate appeals every year. Oh, and that’s just filing…no one knows if they would even be approved.
Beyond that, my only options would be to pay for therapy services out of pocket at full market rate (which runs about $90/hour) OR Jill loses all PT and OT therapy services and we hope for the best.
Early intervention therapy services have been proven time and again as being vital to the long term prognosis of children with special needs. This isn’t voodoo magic or feel good medicine. This is what will change the future of how my little girl lives out her life. Period. And until someone makes it so that the insurance industry actually WORKS (because really, that would be ideal for everyone involved here)…these kids can’t be left out to dry because politicians want to make the easy cut rather than reform the current system…and by the way, no one will really notice, right?
The amount of damage this will do to our kids far exceeds any kind of budget savings the State will see. This is a short term answer to a really BIG problem.
So what can YOU do to help?
1) If you live in CA, please sign this petition. It’s free and easy. Will a petition really change anything? I have no idea. But I also don’t know what else to do. (If they start sending you a bunch of junk, just unsubscribe).
2) Tweet, Facebook, SHARE!!! There’s even little buttons down below to make it easy. Whether you live in California or not, I’m sure some of the people who follow you DO.
Would now be the time to also mention that Physical Therapists and Occupational Therapists in the program were specifically told to not inform their patients of this suggested budget cut and keep it hush hush? Ouch. Very ouch. Does that sit funny in anyone else’s stomach, or is that just me?
I hate politics. I hate to get into the fray. This is the type of post I really have no love for. But I have a network of people I can appeal to…and this is a big enough issue that I felt it worth stepping (really far) outside of my blogging comfort zone for.
I’d implore you to please keep any discussion respectful and kind hearted. I will delete mean spirited comments because that’s not what this is about. If you hate this whole thing, just don’t sign the petition and don’t share it. I get that and I respect it. Trust me, it’s even hard for me to wrap my head around.
I hope you understand and will oblige this one sort-of political post. Regular programming will resume tomorrow. ;)
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I hear you, Parying for the right outcome to all this.
Tracy´s last blog post ..Kitchens and Kittens: All Doing Well
I don’t know much about medi-cal, but even if they do restructure it, federally mandated early intervention programs for kids 0-3 will have to be put in place, and then a transfer to the public school system where things would “theoretically” continue. In our state, we already have what you propose – WITH a waiver system, based on disabilities, you can qualify for state Medicaid for the child ONLY, regardless of parents income. Every state is different here though. Needless to say, the wait list for these waivers are years long, so unless you meet the requirements, you rely on early intervention (which is free) and the school system. Medically, you’re on your own with private insurance. That said, we hear about budget cuts all.the.time, and I find it to be overwhelming because no one knows how any of these cuts will be approved, and more importantly, how they will be applied. Thirdly, 4x pt/ot and 3x slp per week is pretty great! We get less than half that. I hope things turn out better than you hope. But, if they don’t – you will find a way – everyone will. Sucks, but true.
Jenny´s last blog post ..A taste of spring
Unfortunately, my understanding is that our public school system only provides Speech Therapy (Jill will be three in July). So, unless there’s massive restructuring to include PT/OT at the public school level, we lose it entirely. As for the waiver system, I’ve tried to get Jill on that this last year and hit a brick wall at every turn. Apparently she isn’t “bad enough”…whatever that means.
Yep – this is a problem here too. And they probably would have to structure PT/OT in the schools. We have it here. But it sounds like with Medi-cal you don’t need a waiver? Like I said, I don’t understand even my own states system let alone anyone elses! But plenty of people here are in that gray area too “not bad enough” – luckily (???) for us, we usually do fall in the bad enough category – a blessing in disguise, I guess, but I’m thankful every day. I’ll be thinking of you as this comes to pass for you (also big cuts this summer coming in our state) so keep us posted.
Jenny´s last blog post ..A taste of spring
Also I would say that this post is “for good” – it’s not just your family at stake here.
Thanks. :) I STRESSED trying to decide if I should post this!
That’s terrible!! My daughter received aural habilitation / speech therapy 6x a month for the first three years of her life through early intervention (in Illinois) and now that she’s over three she is enrolled in preschool because that’s the only option for her to still be regularly seen by a speech therapist (she’s doing great and at her age level, but with hearing loss we need to keep our eyes on the subject!) … Illinois has had some budget issues (to put it simply). For a while one of my daughter’s weekly therapists had not been paid by the state in nearly two months! I think politicians are shady. That’s all. I strongly believe in Early Intervention – it is life changing for those in need!
Emily´s last blog post ..Wally’s Chicago Flag Pillow
Hey girl, as an in-house lobbyist and former legislative staffer, I’d also recommend that you (and your CA readers) call your state senator and assemblyman and ask them not to balance the state budget on the backs of families with special needs!!!
the Blah Blah Blahger´s last blog post ..BEAUTIFULLY ROOTED
Here’s a great resource I found to help families here in CA do exactly that. We can NOT sit back and let them take these necessary benefits away from our children. It is wrong to deprive our children of these benefits because we make over $40k. Clearly we have worked hard to not be at poverty level and we should not be punished for that. Many of us would be forced to live below poverty level if we lost these benefits for our children. It’s just wrong!!
Here is the link that shows exactly who we should contact and their contact info. There is even a sample letter. We really need to make our voices heard.
http://sfinclusiveschools.wordpress.com/2012/03/07/critical-advocacy-for-california-childrens-services-needed-now/
Nicole Summers´s last blog post ..Super Girl!
I agree with Jenny above. We have to requalify each year for the same thing you currently receive, but here in OH it is based on income as well as need. Thanks be to God we have qualified for almost 3 years and by all standards we shouldn’t. I’m impressed you receive therapy 4 times per wk! That is a lot. One thing to keep in mind is that a lot of the OT/PT our kids receive we could do on our own. We do therapy 1x per week through EI and 1x per week through our hospital. Both PT/OT. I ask for a new set of exercises every few months to do here at home… My daughter is 3 & we found out she has CP at 18 months… I MAKE her do the work even when she doesn’t want to… Our neurologist is amazing and he told us at our 1st appt. with him that the worst thing we as parents could do is not make her work at therapy… As a little child they are only upset during the session, but as an adult they will regret not being given the chance to receive and be forced to do the therapy. I only tell you this in case you end up having to do a lot of therapy on your own. Therapy for us is starting to change from play time to work and now my daughter resists a lot more during sessions then she did over the last 2 years. I pray that whatever direction you are forced to go in, that God will give you peace & the encouragement you need to get through each & every therapy session. I will not lie, my fear is in what 5-10 years will be like because then it won’t just be a struggle of therapy and $ issues, but of self-esteem and while we can physically push them & help them be the best they can be, it seems a lot harder to build up self-esteem in today’s society. I commend you for putting this issue out there. Families who don’t deal with the therapy life cannot begin to imagine how expensive it. I recently had someone ask me how we could possibly have met our $4,000 deductible by February! Well, you see, God blessed us with a very special little girl who just so happens to need lots & lots of therapy;). Praying for you.
Oh, I am more than prepared to figure out how to become a PT through the Medical School of Google! ;) It’s just frustrating. I fully understand that many others in other states have it worse (part of the reason I was hesitant to post about it), but overall it’s just not a system that works for families with special needs. My husband and I have said that if we spread out our 12 covered visits to one per month, we’ll just cram as much information from that session as possible and just recreate it at home. Not impossible, but good grief, I’m not a trained professional! There’s a reason PTs and OTs go to 6+ years of schooling for this thing! Good luck my friend…this is a different world we live in isn’t it?
Every year while we wait to find out if we will qualify for the next years coverage, we say the same thing, we will just do 1x per mth and do the rest at home. And yes, Google and YouTube are the best:). I so appreciate your blog & your honesty. Keep writing, and know that while this journey isn’t always easy, you have been blessed and are such a blessing to the rest of us!
Signed and shared. This is for the good of a LOT of families. Thanks for the information!
Didn’t have to think twice about signing this. Signed! :)
kresspress´s last blog post ..Tantrums
Jeannett, I’m a long-time reader and an infrequent commenter, but wanted to leave a quick note to thank you for publicizing this issue. I don’t have children, but my mom has always said it is up to the parent to be the child’s best advocate. You are being the advocate for all kids who may need these services and, although my opinion doesn’t really count, I hope that you can forget the stress and feel at peace for speaking up for those who may not be able to speak for themselves. Just wish I lived in CA so I could sign the petition! I’m trying to think if I have any friends who do so that I can share the link. Best wishes for a successful outcome and for politicians with good sense.
Thank you. Thank you. THANK YOU. My son has Spina Bifida, we live in California, and we would be affected. He has PT three times a week…there is NO WAY we could afford to do it ourselves. THANK YOU….I have already shared and will blog about it later. THank you. ((hugs))
Tracy @ Dear Life From a Mom of BOys´s last blog post ..Wheelz
oh, jeannett. i will be praying for a solution to this great need!!
right now, our state services cover based on need. super grateful because we don’t qualify on income! (but we are certainly not able to afford all the therapies elijah needs!)
elijah has 4+ visits per week as well, and it is crazy how hard it is to manage the financial end of all of this! praying for your family, to have peace and trust in jesus. he will provide!
love you xoxoxo
jeremiah 31:3
the Lord appeared to him from far away. I have loved you with an everlasting love;
therefore I have continued my faithfulness to you.
hannah singer´s last blog post ..this week, it’s spring!
oh yes…not qualifying financially doesn’t imply i can afford services out of pocket…not by a long shot!!!
My son got EI services till he was three we are in the state of WA. (never mind we started the process of finding out he needed it 4 months before he turned 3) He now goes to a preschool through the school district and all he is there for is speech but if he qualified he would get more. He had his services through a center that was supported by the local chapter of ARC. Have you got one of those in your area? I can. not. say. enough. amazing. things. about our ARC chapter and the center he was at PRIDE for Kids if we have any Vancouver WA readers out there who need it. They have support groups, a parent coalition and more. If you have never worked with the ARC. I might suggest you contact them they may be a great resource. I am sorry you have to deal with this $$ wise, we also did some private sessions and it was just speech. Although he qualified for assistance, they had to bill our insurance as we had it so we had to meet our $2400 deductible so I feel your pain.
I’ve never heard of ARC, but I’ll google around and see. The school district only provides speech and preschool…not physical or occupational therapy so we would lose it completely. This world of special needs is really not all that bad…until you have to deal with the beauracracy behind it!!!
I agree about the ARC – we are very, very active with them in our area. http://www.thearcca.org/ – here is the CA – I guarantee they have this on their radar and might have some good ways to get involved locally. Also, like I said, things would probably change OT/PT in schools if this passes. But, who knows.
Jenny´s last blog post ..A taste of spring
Ironic though isn’t it? Because a massive restructure and simply moving services to a different agency is super cost effective, right? Brilliant.
I wish you were were I am in Vancouver WA. I was SO in love with Pride and I know you would love them to. PRIDE stands for Parents Receiving Intensive Developmental Education. Just right up my alley They even were willing to work with us on the cost. When we were given a choice of 3 types of places to chose from, they told me this one required the parents to be at each session, because they believe parents are the best teachers I said sign me up. My son just needed speech so as we have grown out of it we are not really involved. I am telling you as did the other mom contact ARC. If they are anything like the Vancouver WA chapter, they are here for you will have so many resources.
oh my word, I’m SO sorry you’re dealing with this!! :( I currently teach K-2 Autism Support, but I have just accepted a job working in Early Intervention (birth-3) . I live in Pennsylvania, and this is so scary to think about. I wish I knew more about legislation in CA and different agencies out there…but I only know of resources here :(
It’s just SO incredibly frustrating when politics and budget cuts get put in front of kids needs. EI is SUCH a crucial time…I will pray that this doesn’t pass!! :(
Christina @ Christina’s Adventures´s last blog post ..Spring Mantle
I’d say this is a very good use of blog space! I don’t live in CA, but I have many friends who do and I’ll be passing along a link. I’m a former pediatric NP and I know that early & consistent intervention is key. Also, that last bit about PTs and OTs being told not to tell patients? That’s just disgusting.
As the mom of a severely special needs child I am absolutely appalled by this proposed change. What in the world is the matter with the people who make these decisions? We’ve had to fight every step of the way in order for our son to receive the kind of care and therapies that he needs. Shame on the government for putting dollar signs before the future of our kids. Shame. I sincerely hope their decisions come back to bite them on the butt someday and they all of a sudden need unavailable “assistance” from the health care system.
Delilah´s last blog post ..So What?
Of course you should post this. You have a great forum for 1) educating others and 2) bringing attention to something that impacts us all. Isn’t that what your blog is all about? I think so. I work for a county in California. I have first hand experience with budget cuts, both personally and professionally. I’m off to check out that petition.
Best,
Caryl
Thank you for taking the risk and blogging about this. What infuriates me most is that $40,000 max has been that way for dare I say….I heard more than 15 years, with no increase. Appalling. We are in the exact same boat. Living in California. Receiving PT/OT. Making too much money to qualify for Medi-cal, but not enough to afford these outrageous expenses that private insurance doesn’t cover.
One thought….have you applied for Jill for Regional Services? If not, I’d love to chat with you about it. I think Jill would qualify with a little fight. We were kicked out of the system when Blake turned three and I took it all the way to Sacramento to fight for him, but still lost because of some crazy wording the 5 parents who formed Regional Services used to qualify a child for services. But it is worth chatting about. I’m assuming that this isn’t the service being cut…but that CCS is what is changing. I could be wrong though.
Yeah, she has speech through regional but these changes are specific to CCS.
Okay…as a mother of 2 children who have needed many different medical issues and emergency situations dealt with for 16 years, it has never occured to me to go to the tax payers to pay for my childrens needs, financial or otherwise. I make very little money but know that I will find a way somehow to take care of my children and myself. Is it fair how much the therepy is costing…NOOOO. But, the state of California has many needs to meet and a budget to pay for those needs and that budget is funded by the tax payers of California. Jeanette, I find so much inspiration from your blog and your family makes me smile daily. I believe that through my heart and through the God who loves me, I give in so many ways to those in need. I just don’t think the government can fund every service and every need of it’s people through forced taxation. The budget can only service so many needs based on what is needed by all the people of California. I am not trying to be cruel….life is not fair but our God loves us and how lucky we are to have each other to love and support. I don’t know if you will post this or not….I have just always believed that God will find a way for us all….but requiring the government to fund through tax dollars….your neighbors dollars….to meet the needs of you and yours I do not believe is the role of government….it is the role of charity and the role of the family to take care of themselves. So, God Bless you and your wonderful family….every day!
We receive great benefits from our state (OH) and not Medicaid, but a secondary carrier (called BCMH ). Your opinion is definitely valid, but we pay major amounts of $$$ through our taxes. Therefore, why is it wrong to receive something in return. I remember feeling guilty about qualifying for our states program because financially we made too much, but considering how low the standards are, most working Americans would make too much and we are middle class Americans… I say that because it is thru an absolute miracle that we have qualified for 3 yrs. now! I agree with you that God knows our needs and will provide and through our states program He has done just that. My mom told me something very important, NOTHING IS FREE! If you work and pay taxes, are you not paying for these types of programs? Of course you are. I have no idea what Jeanette’s family income is (nor is it my business), but I can almost guess between the amount of taxes her & her husband have paid in taxes throughout their lives in all of their jobs combined, they have probably covered the amount they are receiving in therapy.
Courtney,
Thank you so much for your kind hearted comment. I appreciate that you felt comfortable voicing your opinion and that you did it with love. The truth is, I absolutely agree with you! The State really has no business paying for my daughter’s therapy…and it’s something that bugged me right from the beginning. I remember thinking “why am I getting State funded therapy? We have insurance! We pay a TON of money for…we should just use that!” So, almost three years ago, before any of this was going on, I looked into it…to find that not only was my coverage practically worthless…but so was pretty much ALL private insurance coverage for therapy services! So this whole thing of cutting funding puts parents in a Catch 22. I’m not looking for free handouts…but until the insurance industry is forced to change…and that’s not something anyone but our legislators realistically have the power to change (and by change, I do not mean socialized care…but some regulations), we’re stuck with no options. It’s been something my husband and I have struggled with from a political standpoint, but until REAL change can happen, and parents aren’t left with little/no options (even when spending tens of thousands of dollars yearly on healthcare even before this!), it puts a family in quite the predicament.
As you know, therapy isn’t like ballet or t-ball. It’s a medical necessity. A necessity that should be received at least weekly, if not moreso…not just as the need arises. And if my insurance (did I mention we spend A LOT on?!) doesn’t cover it, my daughter pays the price for crappy legislative oversight and lousy government nonsense. Because in addition to the premiums we pay monthly, and the astronomical deductibles, copays, prescription meds, and all the specialists that AREN’T covered at all somehow…we simply cannot afford to pay out of pocket for these services. Which is ironic because we are paying by the arm and leg as it is.
This is why I called insurance myself today…willing to pay more for a different plan that had what we needed, only to find that it pretty much doesn’t exist (well, that is, until you get into premiums that are almost as cost prohibitive as the therapy itself!).
I hoped I had implied much of this tension in my post…but I was trying to keep the post short and I was pretty sure someone would bring this up in the comments, so I was prepared. :)
I am praying for you guys. I also posted this link to Twitter. I don’t have much insightful to say, but $40,000 is just unreasonable.
Brittany´s last blog post ..Book Review – #2
My youngest child was 12 months when we started with in-home therapy provided by the state. At the time we were told that he wouldn’t talk and most likely wouldn’t walk without a brace. I completely believe that if it wasn’t for the multiple weekly therapy that might have been a true statement. I now have a 5 yr old that not only walks, but he runs and jumps and can carry on a complete conversation. I think politicians look at the money spent for early intervention and don’t look at the lives that have been impacted. There is no way our insurance would have ever covered all the therapy we received and I don’t think I would have the little boy I have today without it.
I hope that the people in Sacrament realize how important these programs are.
Lene Bond´s last blog post ..Hair’s To Today…Yesterday
Hi Jeanette,
Thank you for posting the link to the petition. I think this is an important issue that needs to come to light. There are many, many hard working parents out there with special needs kiddos that simply can’t afford all the therapy that their children need. I know that first hand. My daughter received speech services through regional services (I’m also in your home town) for 2 hours a week from age 1-3, PT once a week from 3 months to 2 years, and OT twice a month from 2-3 years old. The EI services in our area are incredible and I certainly credit all of these service providers for where my daughter is today. Research proves how important early intervention is. No brainer, really. But do the people sitting behind a desk in Sac understand this? Sadly, no.
We spent $90 a session at a local OT place out of pocket each week for a few months because I knew she needed more than what was being provided. It hurt, but we made it work. As a parent, you always make it work. Tri Counties made us contact our insurance to see if they could cover our speech services. Our insurance would only provide rehab speech services following an “injury”. Aubrey didn’t qualify under their guidelines for any speech coverage.
But, as soon as she turned three she went into the Preschool Specialist program with the County Office (the service Jill will get when she turns three as well). The County Office of Education offers a wide range of programs (preschools) and services depending on the need. My daughter still gets Speech 4xweek and she also gets APE (Adaptive Physical Education) 1xweek. Jill will switch to an IEP at three years old. Her needs drive the goals on the IEP. The goals drive the service. OT is harder to qualify for in the school system, but it is available.
Let’s hope that these budget cuts will spare the schools, special education and services in general for all kids.
Kelly´s last blog post ..Daily Life
Yes, we always make it work, don’t we? And I know that even if all of this goes through, we will find a way. It just shouldn’t be this way. It really shouldn’t. Sigh…
I am SO glad you posted this. This is definitely, without a doubt, something that needs to be changed. I was an elementary special education teacher in Texas before I became a SAHM. I wish you lived in Texas ’cause I could help a girl out! I’ll be reposting on facebook :) Also, and I’m sure you’ve thought of this, but have you tried approaching the OTs/PTs about a reduced cash price? It might be worth a shot.
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We have a daughter with undiagnosed developmental delays and are going through the same thing with PT, OT and Speech Therapy each week. We have to pay the deductible each year but the insurance picks up 70% of the cost after that. It’s a PPO with Anthem Blue Cross – not sure what plan but they’ve been good so far.
Thanks! If we have to switch insurance, I’d be happy to do that (if this passes). I’ll check this out! (Our policy works the same as yours: deductible first, then 70%…but it maxes out at 12 sessions…at the 13th, they cover 0.)
I don’t know how it works in CA but here in NE, Early Intervention is through the school district. So it is my understanding that it is paid for by taxpayer dollars that fund education. Given that we have an astronomical property tax rate, I don’t feel guilty in the slightest getting EI for my disabled child (also I homeschool so I don’t even send my oldest 2 to public schools that I pay for). Secondly, in NE we have a great Medicaid program that actually has pretty high limits to qualify kids for insurance. Thankfully our son qualifies for this so we are getting lots of private therapy as well. I’ll be praying you continue to get the therapies that Jill needs. I don’t think there is anything wrong with your daughter getting state services. You PAY taxes for those programs that your daughter is benefiting from. Why is that so hard for people to understand?
Just ran accross this blog today from a link on rageagainsttheminivan. I don’t have children with a lot of special needs. One son is ADD but for the most part we are able to help work through his difficulties on our own. But this topic has always been important to me. I am fiscally very conservative. I generally don’t think the government should be getting involved in paying for very many things at all. However, when it comes to things like therapies for special needs children and then services for mentally challenged adults and even mental health for those with severe psychological disorders I think these are the things taxes have to be taking care of to some extent. Many say that people should be paying for these things on their own or that the church should be helping with these things. Well… I say this as a life-long lover of Christ: the church sure as hell isn’t dealling with any of these issues (for the most part) and individuals obviouly can’t pay for the needed help because of a broken insurance system. I can think of countless other things for the government to cut before cutting these types of services. But the government tends to be pragmatic (in a bad way) and don’t think about tomorrow. Instead of doing the hard thing and dealing with the insurance problem somehow or making more appropriate cuts or getting rid of money-draining bureaucracy they just make some easy cuts that they know they won’t get a big, financially backed, opposition too. They choose to cut mental health (cause people who receive those services don’t have a voice) or they choose to cut help for children with special needs (because who cares what a bunch of moms have to say). There are no powerful lobbyists for these groups of people. What is going to happen when children grow up and they haven’t been able to receive the necessary therapies? Do their problems just go away or do they increase as adults? Who is going to pay for services for adults who have more issues because they were not properly helped as children? My husband is a police officer and regularly interacts with the adults who have been neglected by the system, the church and society. They have nowhere to go. They are trapped in an endless cycle of the street, jail and hospitalization. So to those who criticize tax money paying for these services I ask, what else is being done to help middle-class people obtain the care they need? What are you doing to help your neighbor in need? What is your church doing? Until we can come up with a better way to help our fellow man in need this is one area (of very few) that I support my precious tax money going to.
Jeannett,
I am also in your hometown, and my son is 4.5 and has a clinical dx of ataxic cerebral palsy (no known etiology). He is also served by CCS PT and OT twice a week and a county special day class preschool where he gets speech services and adaptive PE. When my son turned 3 and aged out of Early Intervention, we took his diagnosis to the TCRC “children’s team” and our new service coordinator (who is FANTASTIC) and he was qualified as a consumer under the regional center. This is what qualified him for the Medi-Cal/MediCaid waiver for CA. The process was not too difficult (but we had never tried before he turned 3.) Something about being “qualified” by TCRC with diagnosis at that stage opens the door for being qualified for the waiver.
(We also qualified for getting diapers covered by TCRC once he turned 3, and through the Medi-Cal they will pay for his Pediasure supplements since he is underweight.)
My son’s CP is probably of a similar “severity” to Jilly – he finally started walking unassisted just before he turned 3, has had major delays in all areas of his development. It seemed like turning 3 and moving to “qualification” with the Children’s Team at TCRC was the key to getting the Medi-Cal waiver.
We are in the same boat with therapies and insurance – after meeting our deductible, our private insurance covers 24/yr at 80% but that lumps PT and OT together. Anything after the 24 sessions requires a new “authorization” and of course could be denied. Let’s hope it never comes to that!
Feel free to contact me via email if you want to chat or get any more info…
Hi – I was wondering if you could share what TCRC stands for? We live here in Long Beach, CA and our daughter has Spina Bifida & Hydrcephalus. We too are in danger of loosing her PT & OT benefits come July due to my husband making of $40k. We are a family of five and with what he makes and all of Annabelle’s medical bills we are just barely making it :-( She is 2 1/2 (birthday in July) and I’m so scared that she will loose all benefits once she turns 3 and if this new budget passes. She is cathed 6 x a day and has a feeding tube and is learning to walk with a walker yet we have still never “qualified” for any extra services except the therapies through the local MTU. Any guidance you can provide me would be greatly appreciated. I actually got my first call from CCS today informing me of the proposed budget cuts and she said the feeling around the office is that this is going to pass. There are only approximately 500 of us in LA county that will be affected by this new cut. Middle class is a really tough place to be :-(
Nicole
Nicole Summers´s last blog post ..Super Girl!
Nicole, TCRC is Tri-Counties Regional Center (covers Ventura, SB and SLO counties). There should be a regional center in your area that can assist you with obtaining additional services and possibly qualifying for the Medi-Cal waiver. I would think that her diagnoses would qualify her with no issue once she turns 3. Best of luck to you!
Thanks for writing back. Unfortunately, Annabelle will not qualify for services through RC after her birthday. Because she tests cognitively within range she is not considered a status 2 client which makes her ineligible after age 3. Of course I am happy that she is cognitively doing so well, it just makes it hard since income & cognition seem to be the driving factors for help here in CA. I think I just need to accept that this is how it will be and just start trying o figure how we will pay. I’ve made myself crazy over this since I found out last week. Thank you SO much Jeanette for writing your post. Without it I have no idea when I would have been notified. I was sad to learn that my MTU team has known for almost 2 months and opted to their higher ups directives not to tell the affected families. Thanks again for your help.
Nicole Summers´s last blog post ..Super Girl!