"special" needs

[ZosiaW]

Two of our children are mild special needs. (not autism or IQ related) Mild meaning that they should one day be independent.  Our insurance covers anything they deem medical necessary but most the therapies that would help get them to self supporting adults aren't covered.  They want us to claim them as life long disables and have them live off the government.. Argh...  Currently we are taking advantage of a local grant but once my husband gets his next military orders that's gone.  We made some DIY programs (think MMM gym).  (exact DX is left of intentionally, our kids have right of privacy)

IEP only covers so much.  School claims it medical and medical claims it's educational.  (it's a mix of both) Until we are FI or DH retires we aren't in the same spot long enough to be a good fight.  (not that we don't) I have fought with tricare and they are now covering a small bit more because medicaid covers it.  Some states force these therapies be covered by insurance but none of them are an option for DH while he's in the military. If they were autistic, tricare would cover almost all it.

If we can figure this out we should be able to reach FI before DH hits his 20 years and may take advantage of the possible new retirement options. If not our savings will takes a major hit because one should not be forced to live off the government.  (Our estimate is about 1/3 do live off the government,  1/3 struggle to make ends meet and the last 1/3 are successful with very few limits)

How much should we pad our long term savings for our children?  Our goal is to get them independent but it's challenging.  We'll have a better idea on how to plan for them when they are in their early teens.  We are hoping/working to be FI before that.

[rubybeth]

No real way of knowing how much "extra" you will need without knowing what costs there may be. One thing I would ask is if you both have life insurance, so if something happens to either parent (or both), the kids are covered. If they are truly disabled and will never be fully independent or won't be able to work, I'd have no shame about taking whatever help in terms of government assistance you can get. I also agree that you should try to get them whatever therapies might help over the long term, even if it means you pay for them and insurance doesn't cover (I'm thinking you may mean things like occupational therapy or speech therapy beyond what the school can provide--my sister is a speech language pathologist so I kind of understand this).

[ZosiaW]

Life insurance is covered, and the right kind of will in place.  I've learned since they were DX.  OT, PT and speech are covered. They need more specialized therapies that they claim aren't necessary or should be covered by OT.  We're hopeful that both with finish speech therapy in the next 2 years.   

[MayDay]

Especially with moving often, it might be worth it to pay for an advocate to help you negotiate the new IEP each time you move. 

We had PT denied in MN, as not educational.  Moved to OH, boom, fully covered because in little kids, PT helps socially (can't keep up with other kids on playground) and core strength carries to arms for fine motor which is definitely educational.  Now no matter where else we move we will fight for PT to be covered under those grounds. 

It kind of depends on the specific therapy if you want more advice than that.  Feel free to PM me.

I have one special needs kid.  He does not have an ASD diagnosis, but it his profile dead on.  We have not had any trouble getting the services he needs without the ASD diagnosis, although we would have to doctor hop to get it if we ever wanted to ask the public school to pay for private school, which in OH you can do. 

Adults with ASD have very high unemployment rates.  It may effect our ability to retire early.  We may end up supporting our son for much longer than age 18, either financially or emotionally/behaviorally.  At this point, at age 8, ER is planned for around ten years out.  So much can change in that amount of time that we aren't worried about calculating an exact date and mapping out all contingencies. 

[VAR]

I am a speech pathologist in a school system. I can't comment much on your specific situation but I wanted to add a bit of "inside"info for your consideration.
Services offered in the schools can vary very widely from state to state or district to district. Where I am at now, OT is little more than a consultation to help the classroom teacher. In another state last year, it was more like mini-private therapy. I've found a similar situation with speech services.
Some districts will genuinely try to improve the kid's outcomes, some it's just fulfilling the minimal legal requirements. The regulations are fairly vague and it's up to each district how to implement. And even if your school is the genuinely trying type - school based therapy is very limited, usually in groups, often disrupted by testing etc.

So - if there's some therapy that your children need, I wouldn't expect the schools to address that in a globally effective way no matter if it's on the IEP or not. Pay out of pocket if you have to rather than not have therapy. It is possible to find therapists who will do reduced fees for cash. I know therapists who actively look for such opportunities. If you address things more intensely earlier on, it is much more likely to have a long term positive effect.