Why bringing disability into the light is important...

[Diana or Di]

I still run in to, from time to time, individuals in this world who think that it's better to hide my son's disability. Make him seem as "normal" as possible. Obviously, that irritates the crap right out of me and I turn into Mama Bear. If someone asks about my kids' disabilities (my daughter has a genetic condition and so some structural anomalies) I'm happy to discuss with them how differently-abled they are, because it gives me the opportunity to use an air of "it's no big deal" and casualness to help normalize that there are different kinds of people in the world. And I feel like as Disney people, we do a pretty good job at getting out the memo that the DAS program is pretty great and adds that extra ability to relax and enjoy.

I mention this because I bumped into a mom and her daughter, who had noticed that my daughter has polydactyly and wanted to ask me about it. Again, I'm happy to answer respectful questions, and actually said daughter is happy to explain it on her own, and if you want a daily dose of cute, listen to a then seven year old girl with a speech delay explain polysyllabic words to strangers. The. Cutest. Anyway, the mother sort of hastily explained that she was studying nursing and her daughter is on the autism spectrum, and they didn't mean to be rude, you could tell in an effort to make sure that I wasn't offended. Of course I wasn't, and mentioned that my son was also on the spectrum, and the mom sort of heaved this sigh of relief and opened up and we chatted for a bit. She mentioned that they were sort of just wandering around because her daughter had overstimulated waiting in the queue for whichever ride and she just didn't know how to handle the rest of their trip. I paused a moment to make sure she was done because I for sure thought she would have known about the DAS program. When I mentioned it she jumped on the information like a woman starved and I felt both thrilled that their trip wasn't ruined but also heartbroken for this little girl walking around thinking Disney just wasn't for her, and her mom who felt like the whole mom/daughter trip was a huge fail.

I don't know if they booked themselves or if they went through a DTP. I think we spend to much time feeling like we, as parents, are somehow to blame for things not being easier, so I didn't ask. I just think it's so important to TALK about it. Even now I think people still don't know that there can be resources available to them when it comes to disabilities. We're so used to just making do and trudging on. I say, talk about it. Let people know the things you have to take into consideration. You never know when someone else is walking that same walk and what you or they know has the potential to make life a little brighter.

 

[mamabunny]

I have said here before that often when we see people react negatively to someone with an obvious disability, that reaction is coming from a place of fear, and ignorance. Luckily, as you already know, there is an easy remedy for fear & ignorance: education.

For many of us, we never get the chance to have that special experience that you did, where you can share information - and even more importantly - empathy - with someone, and literally change their life in that moment.

Thank you for sharing! ❤

 

[Euby]

I has a similar situation. Several years ago, I was in the line for the monorail from the TTC (pre-ECV days). The person behind me kept bumping me. Nothing hostile, but it was pretty repetitive. I ignored it for the most part because that was just part of being in line. Then I got a bigger bump that caused me to turn around. Before I could say anything, the dad starting apologizing profusely and explaining that the child was autistic and he wasn't sure that they would last the day if all lines were going to be like this one. I asked if they were planning on using the DAS (i thnk this was before it was called that, but none the less). He'd never heard of it. I explained the little bit that I knew about it and told him to go to City Hall and they would be able to help him out. He looked at me as if I had just handed him a million dollars. I never saw him again after the monorail, but would like to think that I helped make his son's trip (and his) a little more enjoyable.

 

[Jo Lenfo]

I remember my dad wanted to keep my autism a secret and make me tough so I could be strong enough for the real world (I watched a lot of Disney movies and he didn't like it to much) while my mom was more accepting so I could get the help I need. Turns out I can't be something I'm not and of course both my parents had the best of intentions. (My dad is very accepting now) I was like a mirror for my dad. I think he recognized too much in me from when he was younger. I'm now open about accepting and talking about having aspergers if people want to know about me. There is much prejudice though cause some people who don't know me personally but do know I have aspergers already think I live in my own world and will not say a word to me. Its true when it gets crowded it can be overwhelming for me, but with a few people I'm comfortable with I'm social but at least they don't expect to much of me and know it can take sometime for me to process what they are saying and have the patient to wait for my answers, so yeah, I think being open about your disability is important cause its part of who you are and people who accept you will understand.

 

[Allison Joy]

This isn’t Disney related. I hope it’s okay to share this link here, but this is a story about my small efforts for disability awareness, not so much about services, but about a specific disability.

https://www.faithwriters.com/wc-article-editors-previous.php?id=58937
I also try to be an advocate for SPED services, especially for those who only have physical disabilities. Too often parents and even school officials think grades have to be negatively impacted to receive services. Too few people know of the 504 options and just how many services and options are available under SPED.

On a professional level, I work for Vocational Rehabilitation for my state and I always say we are a hidden gem. I think the people who could use our services the most don’t even know about our services, so I try to let people know about VR services.

 

[mamabunny]

This isn’t Disney related. I hope it’s okay to share this link here, but this is a story about my small efforts for disability awareness, not so much about services, but about a specific disability.

https://www.faithwriters.com/wc-article-editors-previous.php?id=58937
I also try to be an advocate for SPED services, especially for those who only have physical disabilities. Too often parents and even school officials think grades have to be negatively impacted to receive services. Too few people know of the 504 options and just how many services and options are available under SPED.

On a professional level, I work for Vocational Rehabilitation for my state and I always say we are a hidden gem. I think the people who could use our services the most don’t even know about our services, so I try to let people know about VR services.

I think *you* are a hidden gem, @Allison Joy! We are so lucky that you are part of our community!

 

[DisneyOma]

This isn’t Disney related. I hope it’s okay to share this link here, but this is a story about my small efforts for disability awareness, not so much about services, but about a specific disability.

https://www.faithwriters.com/wc-article-editors-previous.php?id=58937
I also try to be an advocate for SPED services, especially for those who only have physical disabilities. Too often parents and even school officials think grades have to be negatively impacted to receive services. Too few people know of the 504 options and just how many services and options are available under SPED.

On a professional level, I work for Vocational Rehabilitation for my state and I always say we are a hidden gem. I think the people who could use our services the most don’t even know about our services, so I try to let people know about VR services.

For an IEP, under IDEA:

"A child with a disability is not automatically eligible for special education and related services under IDEA. The key phrase is "who, by reason thereof, needs special education and related services."

Does the child's disability adversely affect educational performance? To be eligible for a free, appropriate public education (FAPE) under the IDEA, the child must have a disability and must need special education and related services. (see pages 20-21 in Wrightslaw: Special Education Law)"

As you mentioned, a 504 works better for those with physical disabilities, as long as there are not any cognitive/academic disabilities as well.

 

[Allison Joy]

For an IEP, under IDEA:

"A child with a disability is not automatically eligible for special education and related services under IDEA. The key phrase is "who, by reason thereof, needs special education and related services."

Does the child's disability adversely affect educational performance? To be eligible for a free, appropriate public education (FAPE) under the IDEA, the child must have a disability and must need special education and related services. (see pages 20-21 in Wrightslaw: Special Education Law)"

As you mentioned, a 504 works better for those with physical disabilities, as long as there are not any cognitive/academic disabilities as well.

You are correct that they must need special education services. However, academic grades are not the only thing they look at, and this is why this needs to be brought to light. Many people have a narrower view of "need" than the law provides. An IEP (not a 504) can also be needed for reasons other than grades. All throughout elementary school, I had an IEP and it was strictly for physical reasons. I actually got near straight A's, grade wise (across all subjects) and was in the gifted education program. My grades were not impacted, in any way, by my physical limitations. Interetsingly enough, this was before I was diagnosed with hip dysplasia and I didn't even have a diagnosis. Yet under an IEP I qualified for PT, speech therapy, and adaptive PE. Because this is extra instruction and not just an accommodation, it fell under an IEP. I said a 504 is another option, but a 504 does not always work better for physical disabilities.

By the time I was in Jr. high and high school, it was a 504 for me, and the accommodations where an extra set of books at home, extra time to get to class (which I never used), and an easy to open locker.

 

[Betty Rohrer]

You are correct that they must need special education services. However, academic grades are not the only thing they look at, and this is why this needs to be brought to light. Many people have a narrower view of "need" than the law provides. An IEP (not a 504) can also be needed for reasons other than grades. All throughout elementary school, I had an IEP and it was strictly for physical reasons. I actually got near straight A's, grade wise (across all subjects) and was in the gifted education program. My grades were not impacted, in any way, by my physical limitations. Interetsingly enough, this was before I was diagnosed with hip dysplasia and I didn't even have a diagnosis. Yet under an IEP I qualified for PT, speech therapy, and adaptive PE. Because this is extra instruction and not just an accommodation, it fell under an IEP. I said a 504 is another option, but a 504 does not always work better for physical disabilities.

By the time I was in Jr. high and high school, it was a 504 for me, and the accommodations where an extra set of books at home, extra time to get to class (which I never used), and an easy to open locker.

I remember when younger daughter was in high school her IEP called for her to have all tests read to her and have her answers recorded not written. then came the year she took Spanish 1. no one in resource room spoke or understood Spanish. we made it work but next year the new aide had Spanish understanding. to look at her you don't see the problem but she had IEP from second grade thru senior year of high school. thanks for the memories as I wont tell you how many years this was

 

[DisneyOma]

You are correct that they must need special education services. However, academic grades are not the only thing they look at, and this is why this needs to be brought to light. Many people have a narrower view of "need" than the law provides. An IEP (not a 504) can also be needed for reasons other than grades. All throughout elementary school, I had an IEP and it was strictly for physical reasons. I actually got near straight A's, grade wise (across all subjects) and was in the gifted education program. My grades were not impacted, in any way, by my physical limitations. Interetsingly enough, this was before I was diagnosed with hip dysplasia and I didn't even have a diagnosis. Yet under an IEP I qualified for PT, speech therapy, and adaptive PE. Because this is extra instruction and not just an accommodation, it fell under an IEP. I said a 504 is another option, but a 504 does not always work better for physical disabilities.

By the time I was in Jr. high and high school, it was a 504 for me, and the accommodations where an extra set of books at home, extra time to get to class (which I never used), and an easy to open locker.

This is what I don't understand - when did schools become medical centers? PT, OT, etc - those things, to me, belong in a medical setting, not a school. To be doing them during the school day takes the student out of the classroom, costs the school district a ton of money, and puts a lot of liability on the district. It makes more sense to me to have health insurance cover the costs, and have the therapy done some other time than in school, in a medical setting that already has the equipment and space. Does anyone know why these things are a part of the school day, part of a school budget? I'm not bregrudging the services at all - they are extremely important - but just wondering how they got tacked onto a school budget/schedule instead of a medical one?

 

[lanejudy]

PT, OT, etc - those things, to me, belong in a medical setting, not a school.

When those needs directly impact the student’s ability to learn or participate, it is a valid service on an IEP. For example: OT needs related to holding a pencil, ability to write or type; PT skills such as balance or endurance so the student can participate in P.E. class.

In my experience, most private OT won’t take on a patient whose primary need is related to writing skills; insurance won’t cover it. They refer the family back to the school for services.

 

[DisneyOma]

When those needs directly impact the student’s ability to learn or participate, it is a valid service on an IEP. For example: OT needs related to holding a pencil, ability to write or type; PT skills such as balance or endurance so the student can participate in P.E. class.

In my experience, most private OT won’t take on a patient whose primary need is related to writing skills; insurance won’t cover it. They refer the family back to the school for services.

Oh I know - I'm just wondering why it's like this. Holding a pencil, holding an eating utensil, things that are not exactly "academic" have become the responsibility of our school systems instead of medical facilities. It just doesn't make sense to me?

 

[lanejudy]

Huh? Inability to hold a pencil and therefore write absolutely directly impacts academics and belongs as the school’s purview. DD’s school OT would not teach use of an eating utensil as it is not directly academically-related (though one could argue that a child who is unable to eat lunch is unable to learn, the whole premise behind the school lunch program). I opted not to push for it from the school because we received better services from our private OT anyway.

 

[Allison Joy]

I'm sorry. I didn't mean for this to go off topic with my SPED services statement.

I would also argue that school is not strictly academic. If it were, we wouldn't have PE, art, music, etc. School is also a means of learning social and interpersonal skills, and being far behind your classmates physically certainly has the ability to impact social and interpersonal skills, even if indirectly. If I can't catch, throw, kick a ball, or run and yet everyone at recess is playing kickball, I'm more than likely left out. PT and OT can help address these. It can also be a safety issue. If I'm not able to walk/evacuate quickly during a fire drill, what happens then? If I can't open the doors because they are too heavy for me, what if I'm last out of the room, the teacher doesn't notice, and I can't open the door? That is why IEPs are broader than just grades. As far as liability is concerned, they are certified OTs and PTs, who would have their own professional insurance, and schools are already insured to the highest level available. Just think about PE and recess. OT and PT are FAR less likely to be an insurance/liability issue than regular PE, recess, and sports. And finally, if parents give permission, the school actually can bill a student's health insurance for PT, OT, and other related services that might normally be covered by insurance.

 

[mamabunny]

You are correct that they must need special education services. However, academic grades are not the only thing they look at, and this is why this needs to be brought to light. Many people have a narrower view of "need" than the law provides. An IEP (not a 504) can also be needed for reasons other than grades. All throughout elementary school, I had an IEP and it was strictly for physical reasons. I actually got near straight A's, grade wise (across all subjects) and was in the gifted education program. My grades were not impacted, in any way, by my physical limitations. Interetsingly enough, this was before I was diagnosed with hip dysplasia and I didn't even have a diagnosis. Yet under an IEP I qualified for PT, speech therapy, and adaptive PE. Because this is extra instruction and not just an accommodation, it fell under an IEP. I said a 504 is another option, but a 504 does not always work better for physical disabilities.

By the time I was in Jr. high and high school, it was a 504 for me, and the accommodations where an extra set of books at home, extra time to get to class (which I never used), and an easy to open locker.

Your experiences were *very* similar to our daughter, and using the right tool (the IEP vs the 504) at the right time was key to her having the best possible outcome.

 

[DisneyOma]

Huh? Inability to hold a pencil and therefore write absolutely directly impacts academics and belongs as the school’s purview. DD’s school OT would not teach use of an eating utensil as it is not directly academically-related (though one could argue that a child who is unable to eat lunch is unable to learn, the whole premise behind the school lunch program). I opted not to push for it from the school because we received better services from our private OT anyway.

But an accommodation of using a tablet or computer would solve that issue in school, right? I'm not saying kids shouldn't get the services, just asking why they are linked to school and not medical facilities? And so far, no one has been able to answer that - why is that too? I can see that it's easier for the parents to have their kid get the services in school, but what about the time missed from class? How about the cost? The expense comes from the town, the tax base, when it could come from medical insurance instead. Does medical insurance cover any of it - could it, if it doesn't now? Would kids get better services if they went to a location that specialized in PT and OT, instead of some section of a classroom with a bit of equipment?

 

[Betty Rohrer]

But an accommodation of using a tablet or computer would solve that issue in school, right? I'm not saying kids shouldn't get the services, just asking why they are linked to school and not medical facilities? And so far, no one has been able to answer that - why is that too? I can see that it's easier for the parents to have their kid get the services in school, but what about the time missed from class? How about the cost? The expense comes from the town, the tax base, when it could come from medical insurance instead. Does medical insurance cover any of it - could it, if it doesn't now? Would kids get better services if they went to a location that specialized in PT and OT, instead of some section of a classroom with a bit of equipment?

even at a med center the child could still be missing classes. the time assigned is by med center not child's. so it could still be during school time

 

[lanejudy]

@DisneyOma you seem to have a particular issue against in-school ancillary services, which is confusing since I believe you work with special needs students, presumably many of whom have benefited from such. Your questions seem to be more argumentative for the sake of debate, rather than truly understanding the issues faced by students who qualify for such services, but I'll give the benefit of the doubt and provide my answers/thoughts/experiences as related to your questions:

But an accommodation of using a tablet or computer would solve that issue in school, right?

Do you really feel the school should incur the expense of a tablet or laptop for each child who needs help learning to hold a pencil correctly? Really? Schools have been teaching how to hold a pencil since long before I started school nearly 5 decades ago. I had a funky pencil grip when I was young and teachers worked with me to correct it. Early grades; not high school. If there is still a problem with ability to hold a pencil and write after about 1st grade, yes a tablet or computer would be an appropriate alternative. And along with that -- instruction on typing/keyboarding skills and use of speech-to-text apps, which again will involve an OT. Dependence on a device should only be encouraged for those who are unable to be accommodated in another manner. It doesn't "fix" the issue, it creates a dependency that may not work well in the real world.

but what about the time missed from class?

Shifting OT/PT/SLP services to private doesn't negate lost class time. In fact, it probably increases time away from school. Like doctor's appointments, such services are usually provided during regular business hours -- typically 9am - 5pm or such. I have a very hard time getting those late afternoon appointment slots for my child for any medical appointment (PED, specialist, therapy, dental, etc.) because everybody wants to avoid missing school. Not everyone has such services within a 10 minute drive; when I pull DD out of school for an appointment, that often involves not only the 30 minutes or so with the therapist, but also travel time to/from, which can easily become 2+ hours out of the school building. In-school OT might pull her from class for 20-30 minutes, or ideally they push into the classroom and work with her there.

How about the cost? The expense comes from the town, the tax base, when it could come from medical insurance instead. Does medical insurance cover any of it - could it, if it doesn't now?

As mentioned above, you seem to feel the cost of equipment is more desirable than the cost of an OT. It may be less as a one-time expense, but does not resolve the issue long-term, and technology needs to be replaced regularly as well as repairs.
I already mentioned that personal medical insurance is unlikely to cover OT related to writing - it was impossible for us to obtain such services privately unless willing to pay 100% out of pocket. Schools can and do charge some services to Medicaid for students with that coverage. Every year I sign approval for my insurance to be billed, though I don't know if they actually do so. I would have to assume that if they did, it would impact the number of therapy visits we are allowed outside of school. Unlike doctor visits, OT/PT/SLP coverage by personal medical insurance is often limited annually to a certain number of appointments or a certain number of days. And families need to be able to pay any deductible, copay or coinsurance - and if the child's family can't obtain outside services it would impact the academic ability in school.

Would kids get better services if they went to a location that specialized in PT and OT, instead of some section of a classroom with a bit of equipment?

I do feel that my child received better service from the private OT than the school OT. However, the private OT is not allowed to work on writing, and the school OT won't work on non-academic needs, so the 2 complimented each other. That was just my experience; others may have wonderful in-school OT/PT that is just as good as private. DD has never received private PT, largely because we prioritized OT and didn't have time or money for private PT services as well. Her in-school PT/adaptive PE allowed her to join the class in recess, gym class, field trips with lots of walking, etc. For several years her PT services have been a "consult" a few times a year during PE class unless another issue arises. We have always done SLP through the school.