@Regan—-thanks for citing the figures from the article, esp. the statistics for lower-income families and that figure about property damage (though some of what happened to our house is from having an energetic boy).

I am curious, for those of you who have posted or post comments, what system does your county use for special needs type services? I think that makes a big difference. This is our county’s IU web page. They cover early intervention, vo-tech, and handle a lot of the special needs services in and out of school after they hit kindergarten. They even sponsor the county youth orchestra!

I live basically in Amish country, my neighbors are Amish….so this isn’t something you are finding in an urban area, or a well-to-do area!

BTW – Since I file a schedule C, I can write off a lot of the educational costs in my taxes (for books and the like). If you do that, look into it. Also maybe try to file a long form Schedule A, because you never know what all you can include for your medical expenses. (Turbo Tax is a wonderful thing.

I know that the VA school system is very….lacking in a lot of respects. One thing that parents don’t know, however, is that the schools can bill Medicaid for services such as speech, OT, aides, you name it. That saves a lot of haggling over services in the public system!

Likelihood of financial problems was positively associated with use of medical and specialized therapy interventions, lack of reimbursement therein, and having relatively lower income. Use of speech and language therapy was negatively
associated with likelihood of financial problems.

Highlighted:
Expense of specialized intervention strategies; notes common inadequacies of IDEA and insurance coverage which prompts family fill-in. Especially insufficient at school-age and adult.

Other unusual cost
Specialized childcare–both type and length.
Reduction or elimination of work hours for one parent, usually the mother.
Repair and replacement of household items above and beyond typical.

Potential savings
cutting back on family vacations–small.

10% of low-income welfare families have a severely disabled or special needs child. Sometimes basic living needs need to be traded off. SSI potentiallys provide some additional support.

Informal unpaid caregiving 1997 $200 billion/annum v. $32 billion formal home health care and $83 billion nursing home care.

Greatest problems for those families with less than $40K/annum income.

Paper discusses different trajectories of financial planning depending on child characteristics.
——————
Having any kid costs money, so I don’t count things like food or cost of clothing (although where we shop and for what has changed considerably). I don’t really count extra medical because we are all blessed that Eleanor has excellent physical health…and the occasional need for medical and dental specialists has been tolerable, if not completely affordable.
For us, the biggest cost has been therapy and as Kristina noted, the cost of consultants can beggar that of the direct service providers on a therapy team. We also invested in many manuals, books and curriculum materials that would not have been supplied by the service district, and pay out of pocket for trainings and conferences. BTW–I’m not lamenting this, just itemizing what we felt and feel we need to do. We looked at DP, but after the first lawyer’s bill and the poor record of parents prevailing in our state, it seemed more reasonable to spend the money where it would do the most good.

I live in a state (Virginia) that has pretty crappy services and supports for autistic people. We are extraordinarily fortunate that we have been able to pay for our child’s needs by ourselves, but I know many families who are on a years-long waiting list to get help they desperately need. It’s not that these families aren’t looking hard enough or in the right places. There’s just nothing for them until someone either drops out of one of ths slots, of the legislature approves more of them (something I advocate for however and whenever possible.)

Our county has an excellent Intermediate Unit, we have had speech and early intervention since he was 2, and he has had social skills provided by the IU autism team at school for the last 5 years. *I* bought Lovaas’ book and used his methods (not as gospel) while he was young. After reading it, we realized we really didn’t need ABA, because we live that way anyway. Choose what we want you to do, or regret it. LOL

He goes to *our* dentist (those ’special’ ones were a waste of time, money, and worst of all, traumatic). Ours is gentle, and Bug likes him. His meds and doctor visits are paid through his health insurance via the DPW, which I highly advocate ALL parents signing up for if they can.

When the school screwed up with reading, we got 270 hours of tutoring. The school district paid for Fast ForWord, version 1 (we paid for the second version). The school district has loaned him a laptop (which he rarely uses). Now he has a BSC paid for by the county who he sees once a week.

AND he gets free golf lessons with a PGA pro, courtesy of Variety Club’s Golf Buddy program.

There are ways to get a lot (if not all) of this stuff paid for. It just depends on your state, your county, what’s offered, and how much you look. And how much you are willing to pound the school district administration into the ground. Now if I could only get his trumpet lessons paid for….