By Maddy McEwen; originally published on the blog Whitterer on Autism.
This term of art only has meaning in the quagmire of America. Many of us have older autistic children now, but if we could turn the clock back and recall those early days, what would have made a real difference? Wrap around services. I don’t know what your experience was, but this was ours.
We decide to investigate further. The pediatrician provided a referral. Without a referral we would be unable to make a medical insurance claim. With luck a pediatrician would be able to recommend several specialists to choose from, but that’s because we are in Silicon Valley. Less densely populated areas may have much less choice. With the referral in my hot little hand I make an appointment with my chosen specialist group, who are really a whole team of experts. The specialists have a waiting list and so we twiddle our thumbs for several weeks or months. We make sure we have reliable child care for other children.
Thereafter the team presents their evaluation of the child. We are provided with a lengthy list of therapists available to help our child. We contact each of the therapists each of whom has a 6 to 8 month waiting list for an initial evaluation. If there is no waiting list this should be a warning. The longer the wait, the better the therapist. Time ticks away and the child spins their wheels. Much later we commence therapy, attend each session and learn as much as possible from them so that we can practice at home, where they spend the majority of their time.
What then?[*]After the first month, if you are incredibly efficient, you send in your first batch of insurance claims to your insurance provider together with a cover letter and receipts by certified [expensive] mail because otherwise they will deny all knowledge of the package.
Within the week you will receive a letter corresponding to each receipt from the insurance company, approximately 54, that each tell you to do nothing, that they have received your claim and that they will be in touch with you again shortly.
They get in touch shortly.
In any one receipt there may be any one or more, of the following errors: no date, no code, wrong code, no signature, discrepancies in the time. An additional letter is sent from the insurance company to detail each error individually in a separate letter.
You then return to the therapists to have all the errors corrected and send them all off again. In your haste you fail to send the parcel by certified mail. Not surprisingly, the insurance company claims that they have not received your corrected receipts.
Additional letters arrive to explain that until you have hit your deductible of $5,000 for each child, they won’t pay a penny. You wait a couple of months until you have hit the deductible and begin again.
During the following months, if you’re very lucky, with a fair wind behind you, you may, and I repeat may, receive reimbursement to the maximum amount of 65% because you are out of network, i.e. those therapists that they endorse, who are too far away, and also have waiting lists and aren’t necessarily a good fit for your child, and of course there are very few of them in the first place.
Because several months have now past, the insurance company writes to inform you that they wish to ensure that the therapy is working. To ensure that the therapy is working you must now have an additional evaluation done by each therapist for each child, which will not be reimbursed, to prove that they are indeed still autistic and still in need of services.
You contact the therapists who go out of their way to re-evaluate the child that they initially evaluated less than six months ago. [three months is not uncommon.] Within a few weeks the new evaluations are ready and sent off by certified mail to the insurance company. The children continue to receive therapy in the interim. The bills continue to be paid by you, in the interim.
With the evaluations completed and bills mounting, you collect, collate and send in the next few months of therapy claims to the insurance company. Repeat from here[*] Repeat the whole exercise for child two and amalgamate the claims and double everything else.
But as always, I digress.
Wrap around services:- a co-ordinator. This person does not need any paper qualifications, they need to be a multi-tasker with a cranium full of common sense. Someone who does all the phone and paper work, especially form filling, who has your client referral number tattooed on the back of their hand, who finds the therapists, can ensure that the evaluator communicates with the therapists, interacts with the school, someone who copies and forwards each evaluation to all the other participants, talks with the local service providers for ‘in home services,’ ideally this person who comes to your home to provide services ‘in the home’ is also someone who speaks English or failing that, someone who likes children, finds a slot on the school bus that does leave before dawn or return after dusk, someone who knows that an hour and a half on a bus each way is not good for any child, especially when the school is only 7 minutes away, someone who can see anomalies, such as, what is the point of taking two children on the bus but leaving the typical one behind as ineligible because if you’re driving one typical, you might as well drive all three and therefore it isn’t a real service at all, which is kind of what they’re banking on because if no-one takes up the service then clearly it isn’t needed and that will save the budget some, someone with a slew of resources for allergies, specialist food sources, medical suppliers and sleep specialists, someone who knows a dentist who will accept autistic children, someone who understands that the transit taxi service to and from therapy is not an option for some children without specialist training first, that days are short if you find yourself ferrying children to and from therapy for thirteen different sessions per week after school, finds a good respite worker, a respite worker who could, just possibly, look after the typical child whilst the other two are at therapy because no-one else can take them to therapy, if not, you’re not actually helping, who has the forms for a disabled parking sticker application and corroborative evidence in support of the claim, or the forms for diaper and pull-up subsidies, someone who appreciates that sleep deprived children and parents with a wide variety of intermittent sleep disorders rarely pick up the phone because it is pointless unless there is the remote possibility of hearing the speaker’s words over the din and that e-mail is not a deadly sin and a far more practical way of communicating in the 21st century, and I won’t sue you if you make a spelling mistake, especially if you can only call between 10 and 4 when everyone is here and needs supervision, a person who not only provides specialists with an 8 month waiting list but also has a forward reminder system so that follow up is at least a remote possibility, and yes I understand that you need to conduct our evaluation for services in our home with the children present so that you can check but please understand that at best you will only have 10% of my attention to complete your forms and answer your questions whilst I cater to everyone else’s needs simultaneously, someone who understands that my estimate of the number of minutes I spend on laundry per week is very approximate and subject to irrational peaks and troughs but roughly approximates to a minimum of three loads a day and that I am unable to accurately deduct the percentage amount of time spent upon other family members laundry, ditto food production, ditto cleaning, someone who has heard these terms before:- autism, speech delay, elective mute, echolalia, sensory issues, pica, smearing, tactile and oral defensiveness, to name but a few, someone who doesn’t expect me to explain these terms to them in my children’s presence, someone who realizes that there are two of them, they are related, they’re brothers, they live in the same household, at the same address, together with the rest of their large family, they are autistic now, they were autistic then, they will continue to be autistic, you don’t need to check so often, I’ll let you know if either of them ceases to be autistic, they have names, different ones, the big one is called Owen, the little one is called Leo, Little Leo, does that help, although they are related and autistic, they are not clones, they are completely different from each other, someone who can fit all the pieces of the schedule together, remove all unnecessary duplications because there are two of them, ensures that all these different people know who everybody else is, what they are doing, why and when? If wrap around services started from day one, then this would mean, that amongst many other things, such as, kick starting the process of order, progress and family sanity, my time would be freed up to thrash the bloody medical insurance company into submission.
And that’s the brief version.