Untestable…

I have decided to try and dedicate one blog each April to Mark.  This past January, Mark turned 17  and we are getting ready to “transition” him to adulthood.  We have LOTS to do to get everything ready for this big transition.  I am going to outline what we need to do between today and next January to get everything set up for Mark to become an “adult”…

1.  First, we have to prove that he has a disability.  This is the part that I hate the most.  Last week, I took Mark to the Child and Youth Study Center at the University of Idaho.  Mark sat down and was asked one question from the Wechsler Adult Intelligence Scale test.  A couple of days later, I received a letter in the mail.  The last sentence read, “Due to Mark’s extremely low cognitive functioning, it is this examiner’s impression that Mark is untestable.”  I don’t know what it is about that word but I just hate it…untestable…it makes me cry every time I hear it (yes, I am sobbing while typing this).  Okay, let’s move on because this is just too upsetting…

Clearly, Mark has a disability.  

2.  Next step, I will be applying for Developmental Disability services with the Department of Health and Welfare this summer (usually, you do this about 6 months before their birthday).  They will send out an independent contractor to come and ask me like a million questions to determine the level of (financial) support that Mark requires as an adult.  We will receive a “budget” and then I will work with a Support broker to make a Support and Spending Plan that determines how we will use Mark’s budget for his support as an adult.

3.  Need to apply for Medicaid to help cover medical expenses.

4.  We will also need to apply for Social Security Income.  The social security money will be used for Mark to pay rent and have some spending cash each month.

5.  We will need to decide if Mark needs a Guardian (I am not in favor of this).  We have pretty much already decided that we are going to pursue Durable Power of Attorney (this will let us help manage Mark’s finances) and Durable Power of Attorney for Healthcare Decisions.  I am not interested in taking away Mark’s rights and that is why we don’t want to do the guardianship.

6.  We will need to set up our home to be a Certified Family Home (CFH).  Basically, this means that Mark can live with us and we will be paid to take care of him when he becomes an adult.  To become a CFH, we have to do the following:

• Pay $150 and attend the CFH New Provider Orientation Training ($)
• Henry and I both need to get a background check through the Department of Health and Welfare ($)
• Attend a First aid and adult CPR class ($)
• Take the Assistance with Medication course from a university (an all day, 8 hour course) ($)
• Show proof of home ownership
• Show proof of homeowner’s insurance
• Have our homes electrical system inspected ($)
• Get a letter from the Fire district
• Purchase fires extinguishers for each level of our home ($)
• Smoke detectors in all sleeping rooms
• Fireplace inspection ($)
• Have well water tested ($)
• Pump our septic tank (every 5 years) ($$$)
• Evacuation plan for our home

There are lots of incentive programs through Social Security and Vocational Rehabilitation to help individuals with disabilities start their own business.  The problem is knowing how to get all these programs to work together.  It just makes my head spin every time I read this book (I have read it 3 times now…) and I still don’t understand it all or where to begin.  

I have decided that I really need to just concentrate on numbers 2-6 (from above) at this point and get his supports all set up.  I will have to put off any business planning until after Mark turns 18 next January.  

All this planning is bittersweet, it reminds you that your child will probably not go to college, not drive/own a car, not go to graduate school, not have a significant other, not get married, not have children, not have any anniversaries, not get a job in the community or promotion at work, not buy a home, or meet any of the “traditional” milestones you usually prepare for when you start adulthood.  High school graduation is the last big bang.  I don’t mean to sound so negative and that is why I try to focus on the positives…  

We want Mark to live a meaningful life.  Mark will have a business.  Mark will be a part of his community.  Mark will be a part of his church.  Mark will volunteer in his community.  Mark will go swimming in the summer and jump at the trampoline place in the winter.  Mark will go for walks.  Mark will hang out in his hammock.  Mark will go for bike rides.  Mark will throw rocks in water.  Mark will go bowling.  Mark will learn to communicate better.  Mark will help around the home.  Mark will watch YouTube videos. Mark will learn to become more independent.  Mark will constantly ask for pizza, Cheetos, and ice cream…

I may have posted this pic before but I just love it…Mark hanging out in the foam pit at the trampoline place!

~Denise