Max's longtime music therapist recently moved to another state, which was sad because the kids adored her. Over the years she's gotten Max to sing—even before he had a whole lot of words—and made up awesome songs involving his obsessions including purple, spaghetti and Lightning McQueen.
She recommended a music therapist who runs a business hiring other ones out. We talked. She had someone great in mind. The price: $125 for a half hour.
Whoa.
Right away, I mentioned that was high, noting that the previous therapist stayed an hour and charged $85. A couple days later, I got an email saying after careful consideration she'd reduced her price for all families to $95 for 30 minutes. Better, but I really wanted Max to have at least 45 minutes. In the end, we landed at $105 for 45 minutes. And the new therapist is awesome.
Therapists are amongst the most important people in Max's life, the ones who coax him to articulate sounds and move his hands and limbs in new ways. They are the experts who enable me to enable him. We live in the Northeast tri-state area, where things can get particularly expensive, especially home visits (a must, since Dave and I both work in offices).
Theoretically, the therapists' services are priceless. But in reality, multiple sessions a week adds up to a hefty chunk of change.
There's an occupational therapist in Max's life who is amazingly creative and full of helpful ideas. She also comes to us through a practice that hires out therapists, and we were raised from $155 to $175 an hour when a new owner took over. That is some serious sticker shock; I keep meaning to reach out to the owner, and ask if we can negotiate—but I would not want this therapist to get less money. She travels far to come to us. And like I said, she is phenomenal.
Here's a breakdown of what we pay for Max's therapists:
Music therapy: $105 for 45 minutes
Occupational therapist #1 : $175 for an hour
Occupational therapist #2: $85 for an hour
Speech therapist: $120 for 45 minutes
Art therapist (who comes on occasion): $100 for 1 hour
On average, that's $485 a week.
Reimbursement from our insurance company can best be described as a crapshoot. Sometimes they pay 80 percent of what they deem an "acceptable" rate for services, and sometimes they erratically don't pay—until I pester. Music and art therapy aren't covered.
Rates vary by type of therapy, region and sometimes a therapist's level of experience but still, it's good to know what other parents are paying. Care to share? If so, list where you live (either the state or part of the country), the type of therapy and cost.
Image: Flickr/kenteegardin
We are in Westchester too, and so far all therapies have been covered by EI, then CPSE. As she turns 5 in the spring and transitions to CSE, I am fully prepared for cuts and for us to have to pay out of pocket. I am particularly concerned about OT because evaluations show she has borderline need for it, but in real life, she really needs it. She has been working with the same OT since she was 1. Sigh.
ReplyDeleteAll I can say is that a post like this makes me very thankful that my kid qualifies for the Deeming Waiver (aka Katie Beckett Medicaid) in Georgia and that we found high-quality therapists who accept Medicaid because there is just no way we could afford all of the therapies (I know speech is something like $150/45 minutes, not sure offhand what PT and OT cost) and our insurance doesn't cover much, if anything, AND a lot of what it does cover just goes toward our high deductible. But I've heard that big big cuts are coming to my state's Medicaid program and the waiver in general, and our renewal is coming up in a few months and that's always fun, and I haven't yet explored our options under the ACA, so...we'll see. Happily, my kid's hippotherapy is *free* thanks to a wonderful (and fully certified) stable here that subsidizes therapy for kids with special needs with other programs.
ReplyDeleteI'm in the same boat as CatchupDaphne. Dreading loss of CPSE, which has covered almost everything except his vision needs, swimming (supplemental to PT) and developmental pediatrician. (Oh, and I'm not trying to be Anonymous, I'm just not tech savvy and don't know how to set up a profile!)
ReplyDeleteI recently reconnected with my first ever childhood therapist who I started seeing in 1985 or there abouts (I'm 29) because I needed a PT consult for getting a new motorized wheelchair. The amount of paperwork has increased dramatically since getting my last chair in 2006.
ReplyDeleteShe's in private practice now still working in my home town. She charged $50/1 hour. She was my first and best therapist across the board and the fact that she knew exactly where I lived 21 years after making her last home visit spoke volumns! I live in New Mexico.
So great that you were able to see her! I sometimes wonder if Max will see any of his current therapists into adulthood. His speech therapist has seen him since he was 3!
DeleteI live in Madison, WI. We pay $65 for a half hour of music therapy. And we pay $95 an hour for reading tutoring and OT. The wonderful group that provides the OT and reading tutoring (and we're adding speech) actually handles the billing with our insurance company. We go to them, but it's a 10 minute drive and both my husband and I have flexible work schedules. I do also pay for private swimming and music lessons, but it's not traditional therapy.
ReplyDeleteI wish I could outsource dealing with the insurance company! I had the most ridiculous call the other day to ask why they had refused to pay for a speech therapy session during which they claimed there was anesthesia!!! They finally realized someone had logged in a wrong code. Twenty minutes of my life, gone.
DeleteYeah, I have to say, that's a huge benefit of this place (in addition to great therapists). More broadly, I'm always saying that for me it's not exactly my daughter's disability that causes me stress as much as dealing with unnecessary tasks, like explaining why one shouldn't use anesthesia during speech therapy! (I have to say that story trumps anything I've heard so far!)
DeleteWe live in Utah. While the cost of living is lower, most services are not covered by insurance, government or school districts. It varies by month, but for our autism therapy we can pay $15,000-25,000 a year.
ReplyDeleteOur insurance company pays in NH for our Kiddo with autism, $15,000 a month in therapy!!!! Between ABA, Speech, and OT, and with that being said, he also has the benefit of Katie Beckett (Medicaid - special disability ins. from the State)!! It's Ridiculus, sad, but so true.
DeleteDoesn't Max get his therapies in school? Here in WI, school age kids at least get speech, OT, and PT therapies during school. Why is everyone, who has children in school paying for therapies at home too? Am I missing something?
ReplyDeleteI'm the 1st anonymous commenter (I like to keep my kid's info private on the Internet, but I also wanted to chime in) and yes, my kid gets therapy at school - in limited amounts with specific goals that are directly related to school and to the IEP. Essentially, school gives us the bare minimum (though we are lucky and have great school therapists). It just isn't enough for my kid and so that's why we also do private. Plus, privately we are able to get other therapies (like horses or particular speech specialties, for example). Of course all of this depends (for my family) on Medicaid/the waiver program, and if that changes this all could change too.
DeleteYes, same here, Max gets therapies at school and the therapists are great, but he needs more than can fit into a school day.
DeleteWe do therapy that insurance will cover in "bursts", take advantage of community programs (thank goodness for college towns!) but still pay like crazy for the one therapy a week we will never give up, Hipotherapy. Around $75 a week for a group lesson but it is the best bang for the buck of the lot so we keep it. We will be paying off 11 years of past therapy for years.
ReplyDeleteShannon, can you elaborate on community programs? You get therapy that way? Hipotherapy is awesome, Max got it as a little kid but the closest one open on weekends (the only time Dave or I could drive Max there) is an hour away and we stopped going.
DeleteWe did Applied Verbal Behavior therapy with Maura once - it was a 3 month stint of speech therapy, five days a week, for 2 1/2 hours each day. It was $4,000 a month, or $200 per day. Our insurance covered up to $180 of it per "session" for speech therapy (as it was billed)- so it cost us $20 a day - plus the gas and commuting costs as we had to drive an hour and a half each way every day. The one catch was, we had to pay for it all out of pocket up front, then get reimbursed from the insurance company.
ReplyDeleteIt did work, I'll give it that.
We also did hippotherapy at $75 for 50 minutes, and private ST for $90 for 50 minutes.
This is also all 3-5 years ago at least. I don't want to know what it would all cost now.
I am in Tennessee. We pay $200/hr for aquatic therapy (after a self-pay discount), $150: hr for speech. physical therapy and occupational therapy are each billed to my insurance at $600 per hour. Much is covered through early intervention but my child is about to age out and my state does not have the Katie Beckett waiver or any other waiver for which we qualify because my child is "only" (the state's word) physically disabled, not mentally.
ReplyDeleteLast year when my son (mild hemi CP, SPD, ADHD and a few others) was due to start kindergarten her in NY (Dutchess County) we had his IEP and my husband and I felt that what the school was offering as far as class placement was just not going to work, we decided to homeschool (my 2 olders had done so in the past so I knew what I was in for), after what we felt was some shadiness on the schools part to try to induce us to allow him to be a student there and our continued NO, the school offered therapy that I could drive to the school for several days a week. The sticking point for us was the fact that we were not allowed past the office, my son was to be taken to therapy and brought back and we were told we could not have anything to do with what went on or even see what was going on and that the therapists would not be able to discuss any of it with us so we could carry over at home, that they just didn't have time for that kind of thing. We begged them to allow us to keep our home therapists that after years our son had FINALLY developed a fantastic relationship with, it was refused, come to school and play by their rules or nothing. We refused, I began doing all his therapies myself at home. My insurance would cover all the therapy we need but between gas and co-pays I just can't afford it so I continue to do it all by myself. He is doing great with homeschooling and has made great progress with his "therapies" and for now I'm happy with that.
ReplyDeleteWe are very lucky... in California, Tommy receives private PT 2x/wk, OT 2x/wk, and ST 1x/wk, all free and covered by the state through CCS. He also qualified for 10 assisting sessions per year in preschool, free through the school district. We are blessed.
ReplyDeleteWe live in Georgia. We pay $25 for "special instruction" through the state's early intervention program. That therapist comes 2x per month. We used to pay $40 twice a week, but recently had to switch therapists. My child recently stopped qualifying for insurance to cover speech therapy--which used to be $30 co-pay once per week--so now we pay private $100 for an hour session once per month. My insurance won't pay for early intervention and speech was the only therapy my daughter qualified for medically.
ReplyDeleteEverything except hippotherapy (which we are currently taking a break from) is covered by insurance. (PT, OT, aquatic PT, ABM). Whew. He does get some minimal services through the school district at preschool, but I expect to cut those back as he gets into regular elementary.
ReplyDeleteAll of his therapies are out of house - we (or our nanny) takes him to the clinics. That sees to be the most common approach around here. I would expect having a therapist come to the house (the EI model here) would be very expensive. Their effective rate per hour would need to include travel time as well as actual therapy time. Granted they wouldn't have to have the same amount of clinic space which is a savings, but still - if it takes 2 hours to see one kid for an hour, that is 1/2 the kids you can service in a day.
I know when I was younger my therapies were all covered by EI, later CPSE and then in school. Vision therapy cost out of pocket(but i dont know how much) I went for 6 years saw improvement then stopped b/c it was time for orthodotics. My sister has had OT and PT over the past few years for various injuries and it's all been covered by insurance expect for a $20 copay. I live in the Northeast(that'ss as specific as I well get)
ReplyDeleteHahahahaha there's no reason to be paranoid here. You could specify the state. There's bound to be MANY Kathryns (if that's your real name) in a state... pshhhhh. Ridiculous.
DeleteWe have lived in AZ and MN. In MN we had to pay a parental fee that was based on the parent's income but then most therapies were covered. We were also able to get on a waiver to help pay for bathroom modifications and van modifications. In AZ there is no help for van modifications but you can get a bathroom modified. Also therapy is covered at no cost.. and once your child qualifies there are no fees based on parent's income. I will say that there is somewhat a tier system meaning that the state covered services may not be as good as the private or personally paid for therapies. Crazy how much variation exists between the states!!
ReplyDeleteMy son just got diagnosed. Could you pls give me a bit info i'm in az. Do the state cover therapy for autism? my son is 3 and what is the income limit for this? Thanks
DeleteTampa - pay out of pocket for ABA ( 85 an hour), floortime (50 an hour).. Insurance covers speech and OT both 80 an hour, we are responsible for 10 co-pay per visit..
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ReplyDeleteI have been reading Ellen's blog for quite awhile and enjoy it
From the pictures and stories about her and the family taking lovely vacations, eating out in restaurants, having birthday parties in outside the home venues, beautiful home with great basement renovations etc, it is apparent Ellen and Dave are well paid for their jobs too
Yes--according to the current account in her blog, they are paying almost two thousand dollars a month out of pocket with reported uncertainty as to re-reimbursement and they are still able to do all of the things you described--either they were born rich (which I don't think is the case) or they bring in really good salaries
DeleteNot getting your point? Yep, we work hard for all of the above, I don't see any shame in that—or what the issue might be with starting a discussion about a topic that's central to the lives of parents of kids with special needs.
DeleteI live in the Hampton Roads area of Virginia. I'm pretty sure services are higher because we visit a Health Center of the children's hospital, but speech is $237 for 50 minutes and occupational is $484 for the same amount of time. Fortunately, my insurance plan allowance comes to a fraction of these amounts and we have a copayment of either $25 or $75.
ReplyDeleteOUCH!! Yes, I think it's because it's located in a hospital. That is CRAZY steep though. Sorry to hear that :( Does Virginia offer in-home therapy? Just curious.
DeleteWe are in Missouri and we went through First Steps (birth-3). Joey received developmental therapy one hour per visit, 2x/month which should have cost about $200 a visit I think. His speech should have cost...one hour 1x/week at $150 per visit. His physical therapy should have cost...$150/visit/1x/week.........We would receive the bills but never have to pay them, they would state somewhere near the top *this is not a bill*. It was just a summary of charges for accounting purposes or something.
ReplyDeleteBUT since we were in First Steps and basically poor we didn't have to pay for it at all. I think the charging schedule went something like if you made under $80K per year you weren't charged. If you made $80K-??? you only pay $80 per month no matter how many services you received or frequency you received those services. As soon as he turned 3 he went to the school district (which has an amazing early childhood program) and received speech, physical therapy, and occupational therapy. Because he was on such a huge IEP, we weren't charged for preschool. He's now in 1st grade and only receiving OT.
I'd like to add some physical therapy (it was dropped last year and it's an awful story and I know the school is wrong!) but our insurance won't cover anything and sadly, money is an issue. I try to do things at home to help him. Hopefully it's enough.
hi, just a question, could your beautiful son qualify for medicaid ? and have you considered opwdd for services? i have 4 kiddos with disabilities - all receive different types of therapies for their various issues. i was able to apply for and actually receive medicaid for them based not on my income but on their disabilities. opwdd will pay 1000$ per calendar year for therapies that arent covored by insurance. its not much but with 4 of them receiving such a variety of services it really helps. for example one of my kids is very into therapeutic horseback riding - 250 $ for 5 sessions - her case manager for medicaid submits the bills to opwdd and we get reimbursed for 1000$ per year. opwdd also has respite and vacation respite resources - we use those alot too expecially for when their schools close for vacations. it might be worth looking into if you havent already. please feel free to email me if i can be of any assistance with this. believe me i was just as surprised as you might be that my kiddos qualified for medicaid - it really fills in the gaps that our private insurance doesnt covor. anne in NY (annecarlo10@msn.com)
ReplyDeleteAnne, thank you. Medicaid is something we have not taken advantage of. OPWDD is NY only, right? We are not in NY.
DeleteI thought you were? In the metro NY area I mean. I could be wrong though.
DeleteI'm very fortunate that as an adult (CP) my private insurance covers a small portion of my PT, and the Medicaid Buy In program picks up the rest. If I had to pay out of pocket, I just wouldn't do it. That said, I have only had PT in short bursts for the last several years as issues arise. From about age 12-30, I did not have a regular therapist, mostly for funding reasons. However, for anyone who may be close to University with an school of education or similar program, (ie Ohio State), it is worth checking into programs for elementary aged kiddos. For 5 years or so, roughly age 7-13, I was a student "model" for a college class that was training students in adapted Physical Education, It wasn't therapy exactly, but I received one on one instruction (with lesson plans) in the gym, followed by an hour in the pool. This was in the '80's and it was just assumed that I would not participate in PE in my small private school. The college class was completely free, and a great way to get exerciser once a week. Oh, and it was also my first introduction to the school I graduated from some 15 years later.
ReplyDeleteAlso, I agree with Anne. It sounds as if Max should qualify for Medicaid, based on his CP and developmental delays, not solely income based. It is also MUCH harder to qualify as an adult, as the developmental criteria change with age. Despite the paperwork trail, my coverage gives me breathing room, as it allows me financial flexibility for things that make my life more manageable, such as my monthly massage treatment, and my weekly trip to the hair salon.
ReplyDeletewhy don't people realize health care is like anything else and you get what you pay for
ReplyDeletemy mom had a great caregiver for my dad after his heart surgery and stroke but mom thought she was too expensive and hired someone with no qualifications but who was considerably cheaper
my dad almost bled to death because the new one got the medication dose messed up
I'm in MN and feel very lucky that my daughters therapy is covered 100% by Medicaid. She has a chromosome abnormality that caused cog/dev/verb delays. She gets speech OT and PT for 45 min each per week at a private therapy clinic. She also receives all three at school 20 min per week.
ReplyDeleteWe had a short period a few years ago where she wasn't covered by Medicaid and we racked up thousands of $$ in bills very quickly:(
My daughter is the waiting list for a waiver to cover other costs within our home. We did get a one time grant last year to cover medical ID bracelets, a higher weight limit car seat and an alarm system for the house to keep her from escaping.
I am thankful everyday for the ins coverage because we would not be able to afford any of it.
This is a hot button! I got a wake-up call when we went on private-pay insurance after my husband started a business. It covered...well, basically nothing for my son's autism. Then we attempted to go on the state's plan but made just barely too much money to qualify for anything more than 8 weeks of speech therapy. After that, I was told for my son to attend a social skills group we'd pay something outrageous like $300 PER SESSION. I could only be thankful that my son's autism is mild and these therapies aren't as crucial as they might be for someone else...we did find a local therapist who provides play therapy for just $50/hr. I couldn't stop thanking her for doing something to make therapy more affordable...
ReplyDeleteMy baby daughter gets physical therapy through EI. I also take her to a local pool once a week. It doesn't cost much as she only needs one kind of therapy- physical. I'm not sure I would able to afford a whole lot of therapies. I'm in Utah- Draper btw.
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ReplyDeleteSorry I should have said Salt Lake City. I do 6 hours of physical therapy at home with her. Those 6 hours are spread out over the week as I don't want Amelia to get tired.
In Michigan. We pay 39$ for 45 min of music therapy, 45$ for 45 min of hippotherapy, 37$ for 30 min of massage therapy,10$ for half an hour of swimming. All out of pocket. Plus 2x each PT, OT, feeding and speech per week. One each from EI and insurance both fully covered.
ReplyDeleteTennesse..TEIS. .drops kids at 3 and metro takes over which leaves a lot to be desired. ..also as mentioned ealier no katie beckett waiver. So basically, regardless of severity of disability, a family with one dependant can't have more than 2k in liquid resources to get ssi/disability. So, hippotherapy is 120 (therapeutic riding is much much cheaper), speech 100, OT 100-120, PT 100-120, feeding 100 (45min), aqautic 100-120. Private insurance 20 visits are subject to deductible. .which means they don't cover much if you have a high deductible.
ReplyDeleteIt Adds up quick!
Tennesse..TEIS. .drops kids at 3 and metro takes over which leaves a lot to be desired. ..also as mentioned ealier no katie beckett waiver. So basically, regardless of severity of disability, a family with one dependant can't have more than 2k in liquid resources to get ssi/disability. So, hippotherapy is 120 (therapeutic riding is much much cheaper), speech 100, OT 100-120, PT 100-120, feeding 100 (45min), aqautic 100-120. Private insurance 20 visits are subject to deductible. .which means they don't cover much if you have a high deductible.
ReplyDeleteIt Adds up quick!
Ellen, are these all people that come to your home? We have stuck with clinic-based PT and OT because insurance pays (and Sam also gets secondary coverage through California's Med-Cal program which picks up the remainder IF we use a Medi-Cal-approved facility, which we are not doing right now). So, we just pay co-pays for those ($30 each per week for a total of $90 per week in co-pays). Insurance does NOT cover hippotherapy, that's $105/week, or swimming, but we just do swim lessons at a local pool that has an instructor who has a ton of experience with kids of all abilities. So, that's $30/week. Our music therapist just moved as well, and that was $75/week; we are on a break from speech, but that was $100/week (all rates I negotiated down). I had good luck finding people who were regional center therapists who were willing to come to us for a little less than their typical hourly rate because they were still making more than with their regional center (early intervention) clients because those pay out rates were so low. Regardless, it is a ton of money, and I often (sadly) feel a little jealous of friends who I know make the same amount OR less money than I do but get to live much more financially care-free lives because they don't spend this kind of money on therapies!! Not to mention . . . we don't (right now) pay for any special activities for our younger, typically-developing daughter, which feels a little unfair since Sam is riding horses, etc. I know we need to look for activities to put her in as she gets older but where is THAT money going to come from?!!! Does Sabrina do any activities that cost you money like this?!
ReplyDeleteYes, they all come to our home, which is partly why the prices are on the high side. Sabrina's activities are relatively way less expensive, she does gymnastics and dance class. And when Max does art therapy at home, she joins in, so two for the price of one. :) I'm also a Girl Scout troop leader, which she loves--and she knows it's something I do just for her.
DeleteDoes anyone else live in NJ? Since EI is on a sliding scale we must pay for all in-home services. My husband's insurance barely covers any of my daughter's therapies. She needs Speech 2X week, PT 2x week, OT, and a teacher of the deaf. We struggle with it. These art, music and water therapies sound so lovely, but we are just trying to figure out the basics. She has a chromosomal abnormality and it came with global delays plus cleft palate which she just had fixed.
ReplyDeleteAmelia is in EI. Right now we do PT 1x a week. I take Amelia to a pool 1x a week. The water helps relax her tight muscles and she LOVES it. Pool therapy is informal. So one session of EI PT thats all. I also take her to a private PT.
ReplyDeleteI am a 1:1 teacher and Therapist in Georgia currently working at a private school specifically for children with Severe special needs. I am looking to branch out and do private home therapy for children. My idea is to base each session off what goals each child is working towards in other therapies (as well as my own) so that the child gerealizes skills as well as develops talents. I have an undergraduate in early childhood special education and a masters in autism and behavioral disorders. I also have put myself though extensive personal development through pyramid educational consultants (PECS certified as well as SGD transitions certitudes etc) and future horizons (Temple Grandin). I am trying to figure out what I should charge families for my private services. I do know that I am covered under some inurance plans (I already do some part time private therapy)
ReplyDeleteWe haven't started yet but I'm already dreading it. My job is with Delta I'm a stewardess for them. Still it will be worth it.
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