My friend Traci handed me a phone number after our Connected Child book club last week and said 'when you have had enough - call this lady." The number was to our local link into the Medicaid/Special needs assistance person and by Thursday I was exhausted, emotional and 'had had enough.'
I called and talked to a wonderfully compassionate and realistic woman who actually asked the question that I wish someone had asked me earlier in our journey. "WHY on earth did you adopt these kids through private agencies without subsidies or support in place? I CANT help you hardly at all because of it!" Which of course made me cry...but not out of control, just more as an affirmation of what i had been thinking myself. We (and many other adoptive families) are in an awkward position.
What I know now and wish I known earlier is that between the way private health insurance has been moving (fewer and fewer benefits for mental health issues like FASD and an almost total dependence on the early intervention services of public schools that are already overloaded.) and the way the public assistance programs run (our kids are too high-functioning to qualify for benefits, we make too much money to qualify for others and the wait list is 5-7 years in Colorado anyway) the odds are definitely against us and more specifically against our kids.
It's a sad thing to face. For 15 years I have been a strong advocate of private adoption - trusting that the high adoption fees that are involved will be paid and children spared years of languishing in the foster care system. I am still an advocate (and willing to adopt again) but when I am counseling potential adoptive parents I am adding into every discussion the reality that the cost of parenting kids with FASD's is higher than most of us can pay for out of pocket and the tide seems to be turning away from providing the care and treatments that would best help our kids. I am encouraging parents to seriously follow up on provisional subsidies before bringing home a high-risk child through private adoption (benefits kick in if there are genetic or prebirth damage related diagnosis later - it's like a safety net.)
So what does it all mean? I don't know yet - I am still struggling to find a FASD specialist in Colorado that will work with my children and am resigned to paying their high fees out of pocket. Ten years into this journey I am becoming more aware of the long-term emotional commitment that I need to make to my children's care and gaining a deeper understanding of what that might entail. I am not discouraged, but I am seeing the reality of what lies ahead and taking a deep breath to take the next step.