Tonight I went to the local library to the first of a series of seminars given by the local agencies that service the community of people with disabilities. It was mainly an introduction and overview of the services and programs provided to Maryland citizens over the course of their lifetime. I don’t often spend much time thinking about what Edda will do or where Edda will be once she’s 21 and has aged out of the school system, but I was surrounded by parents of kids who are graduating from high school trying to navigate adulthood.

There were some frustrations, figuring out how to apply for appropriate day programs, how to get medical insurance coverange once the child has turned 18, how to secure expenses for vans/home modifications.

I’ve been working this past week on how to get funding for an adaptive van and a lift for the stairs. I do not need this right now, I think Edda will need them in a year or two, but I think there is no funding from the state for these kinds of environmental modifications. My guess is that beyond the cost of a regular minivan, the truly adaptive minivan will cost another 30K and then the chair lift, maybe 15K.

Sometimes I wish I could peek in on Edda’s life when she’s 20 or 40 to know that somehow we will make it to that point in one piece, to know that she will have found her place in the world and that she is happy.

4 thoughts on “Challenges.”

  1. Don't let this overwhelm you. Everyone around Edda is a caring person. But, in order to take care her more effectively and affectionly, the persons around her should have their own regular life first. And I understand this is easier said than done. But, this is the way that it should be.

    Judging our current situations in the USA, generous help from our society to the real needy as a whole is becoming less. This is not because we, as Americans, become less generous. But because our economy is weakening everyday. In addition to that, the government is tangling with show-biz & paper work more, and less on real things. Finally, our entitlement programs are un-stoppable because it is the easist way to please many blocks of voters.

    In short, public assistance will become less certain. The easiest way is, while seeking public assistance, self-saving-help should be in the main equation to guarantee that Edda will get proper care in the future. Every family can do this. This does not mean everyone in the family should sacrifice their usual enjoyment, for example to have a vacation, and bend their way just for this purpose. But rather it means discipline. For examples, using coupons more often, find the cheap gas station, plan your trip to buy things in one trip, make right- turn more than the left (5% saving on gas) and do the right investments.

    After doing all you can, Edda should be okay. She is lovely and she moves me greatly and, for that, I am fortunate.

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