We're Going to Heaven on the Subway

A few days ago the LA Times (http://www.latimes.com/news/local/la-me-0501-autism-hearing-20120501,0,6943341.story) reported on a hearing concerning the disparities in CA state funding spent on children with autism. I'm not surprised although I am chagrined that what is happening here in AZ, land of Libertarian anti-authoritarian self sufficiency, also is the norm in CA, the traditional mecca of Liberal leaning Progressives. For the past decade I've been referring to the AZ publicly funded "system" (healthcare, education and social service) for people, especially children, with autism as Middle Class Welfare. Despite AZ advances in diagnosing Hispanic children with ASD (http://www.cdc.gov/ncbddd/tenyears/documents/autism-event/ADDM_10yrs.pdf), the great majority of parents I meet in therapy center waiting rooms and local online autism parent support groups are overwhelmingly white, educated and middle class. A decade ago when my son was 1st diagnosed and I was struggling to secure critical early intervention services for him, during a public meeting the parent of an older child with autism admonished me to sit down and shut up because my son already was receiving more intervention than her son received at that age (she obviously was unaware of the difference early intervention can make). Even my son's developmental pediatrician initially questioned why he should help me secure additional services for my son when so many of his other patients had so much less intervention available to them. The Great Man was astonished that I was able to secure so many services so quickly but to me waiting 3 1/2 months for early intervention to begin was criminal. I have never requested anything from "the system" that wasn't 1st recommended by a treating professional. From the beginning the 1999 NYS Dept. of Health Clinical Guidelines (http://www.health.ny.gov/publications/4216.pdf) was my north star. Before it was available for free online I ordered my own copy. Would you expect any less of me? I may be stuck in this God forsaken desert because of my husband's job but that will never deter me from securing what my son needs to help him reach his fullest possible potential. A decade ago I had much to learn about AZ. The Great Man (a fellow New Yorker) reminded me countless times over the past decade that AZ is not NY. The Great Man and I immediately struck a deal those many years ago. The Great Man provides whatever scripts and reports (as long as the therapies are medically necessary in his professional opinion) I need to get my son what he needs and I share my experiences with the parents of the Great Man's other patients. It is a pact that has served my son and I hope many other children well especially as more parents of children diagnosed with autism at the same time and after my son reached across and back to pay it forward and share their experiences with other parents. Things here in AZ autism land were going pretty well until January 2009 when the economic bottom fell out and AZ made draconian cuts to public healthcare, education and social service funding. While we weren't as progressive as NY, CA, MA, NJ and some other states, we were moving forward and people with developmental disabilities, at least those whose parents or other advocates could navigate "the system," were receiving much of what they needed. After the Great Recession it became a very different ball game. Like most Americans I await the June US Supreme Court decisions regarding the constitutionality of the Affordable Care Act and AZ's SB1070. Unlike many Arizonans, my primary concern isn't illegal immigration law enforcement. I worry about Federalism, States Rights and it's effect on public funding. We are poised on the precipice of Medicaid reform and depending upon what the Supreme Court says in June we will find ourselves trying to surf the new normal from either the crest or the trough. Last year when discussing redesigning "the system" I told a room full of people that we need to remember we're going to heaven on the subway. For Christmas 1978 my friend Fr. Mike Bassano gave me a copy of Michel Quoist's Prayers (http://books.google.com/books?id=SXes4G5IToMC&pg=PA26&lpg=PA26&dq=michel+quoist+prayers+subway&source=bl&ots=xl7U-0WnUt&sig=cMxWBRfPKKlyZgZQkfnlkMrEd74&hl=en&sa=X&ei=dyOkT-THN8HjiAL0tvC-Aw&ved=0CHAQ6AEwAw#v=onepage&q=michel%20quoist%20prayers%20subway&f=false). The Subway has helped guide me all these years. While I am here in the desert tilting at windmills Mike Bassano is a MaryKnoll Missionary in Tanzania (http://www.fathermikebook.com/, fodder for another post). My prayer continues that as we redesign "the system" we use public funding more equitably so that all people with developmental disabilities, especially autism, have the therapies, supports and services they need to not only survive but to thrive. The Great Man and my other like minded friends don't worry so much about my son because they know my husband and I will take care of him. It is worrying about those other people with developmental disabilities who, for whatever reason, don't have advocates navigating "the system" on their behalf that keeps us up nights or in my case, increases my grey hair.