Since that time, we've become increasingly frustrated, as the years have passed, with the inadequacy of services for education and daily life that would help us establish some sort of self-sufficiency for Robert and ourselves. I am beginning to ask myself why I live in this hell hole of a state.
Researching the film Including Samuel for a school function, I was struck by how disability-friendly New Hampshire seems to be. I grew up in Vermont, next-door neighbor to New Hampshire, and New Hampshire sort of always lagged behind Vermont in terms of the quality of the public schools, public services, and so on. Professors and staff of Dartmouth College were famous for living across the river in Vermont because the quality of life was better. Watching the trailer for the film, I was struck by the augmentative technology and other resources that appear, casually. IN the classroom!
When Roger and I enrolled Robert in the MCPS preschool program, an unpleasant person from the County's special education department sternly warned us that not all children with disabilities were educable, and she wouldn't allow students to stay in the program who failed to make "progress." So much for human rights in Maryland. Robert's preschool program was actually very, very good--but that gave way to elementary school where we spent two to three years wondering where all of the supports were that had been there in preschool (in the same state, in the same county). We asked about that, mostly politely. Mostly, but not entirely, we were handed versions of the rationale that only some children with disabilities were worth investment of resources. That our child was lucky to be able to set foot in the school was the apparent interpretation of inclusive education. There was muttering about children needing to meet the expectations of the general ed classroom, of "functional" communication being predicted as the only thing Robert would need from age 5 or 6 on (despite a lack of diagnosis), and so on. His MCPS physical therapist put on an excellent light show one year, simultaneously claiming some sort of effusive parental-type love for him and castigating us for our cruelty at wanting him to learn math. His need to go to math interfered with her busy schedule, and she could not accommodate him at another time.
It's been rocky, but things have gradually improved. We lost a lot of time, though, and I will never know if Robert could have gone further if we hadn't been met with such a wall of bias in his early elementary school years. The next question is noticing that MCPS services for children with serious disabilities seem to drop off a cliff after fifth grade. Which is where Robert is now.
In the meantime, we finally rose to the top of the DDA's waiting list for in-home services, which allowed me to finish my MFA and go back to work part-time. Unfortunately, we were given an aide who worked out for a while, but then decided that he knew more than Robert's doctors about Robert's care, refused to follow our directions, revealed himself to be a raving misogynist, verbally abused my daughter, and used my house as a crash pad at all times of the day during the week. He also destroyed our property--namely elements of the downstairs powder room. We let him go, and have been in babysitting limbo ever since--the social services agency that the state subcontracts to kind of runs a racket, we've discovered. Robert's services were audited, and we found out, almost accidentally, that the state pays the agency more than $26/hour for his care, which the agency bills out at $12/hour for caregivers with no nursing experience or other experience with anything other than cognitive disabilities. As you can imagine, that has caused quite a stir in our house. After the Evil Aide was let go, we were pressured by the agency into hiring some of our own staff, which they claimed they would only reimburse us for at $9.08 (hypothetically, they're supposed to be paying taxes for those employees for those hours, but they do not)--hmmmm, I wonder what they have to gain.
While forwarding things to the school's special needs parents listserv, I ran across a 2008 report from the Maryland Commission on People with Disabilities. The report talked up the Commission's worthy, but rather small accomplishments (making libraries accessible and building a handful of accessible homes), and then duly noted that Maryland ranked 43rd among the states in terms of funding for children with disabilities. Only 8 states ranked lower: Alabama, Colorado, Florida, Georgia, Kentucky, Nevada, Texas, Virginia. The usual suspects, but apparently other states that you would expect to be pretty low on the social services totem pole are better than Maryland: Idaho, Alaska, North Dakota, South Dakota, Montana, West Virginia, Ohio, Oklahoma, Nebraska, Kansas. Wow. I mean, based on how liberal Maryland is, you would expect it to rate at least at the lower end of the group of states Kerry won in 2004. Other good news: Maryland devotes 21% less resources for community services than any other state, and it has one of the lowest Medicaid eligibility income limits in the country.
Oh, and our Democratic governor, Martin O'Malley, has just managed to push through a ballot initiative that will fund the public schools with gambling revenue (slots)! My response to this initiative was to suggest that if it were such a good idea, perhaps Mr. O'Malley should fund state employee's salaries with slots revenues and make a real financial commitment to Maryland's children. It's reassuring to know that while some children will be left destitute due to their parents' addiction to gambling, the public schools will be in good shape. Maybe they can build dormitory wings on the schools to provide temporary shelter for families.