Living Life

For years now I have worked in a career of helping others; helping children who are blind or visually impaired to learn, helping families find resources, and have even been on the receiving end of these same services myself as a child and adult.  Texas has an excellent  entity called the Division of Blind Services under an agency called DARS.  The Blind Children’s Program and the transition program offer a huge amount of support to qualifying consumers.  As an adult the Vocational Rehabilitation program has been a huge help to me personally.  I wear biopics for driving.  These are glasses that help me see the details like reading signs through telescopic lenses.  They are very costly and the VR program has purchased these glasses for me on 3 different occasions over the pat 20 years. For this I am extremely grateful! I have never had a single problem with the Division for Blind Services.  I cannot, however, say the same for the Division for Rehabilitation under DARS.  

You see, the rehab division has a waiting list for services.  I remember a few years ago the state was going to impose a waiting list for the blind children’s program and the visual impairment field fought it heavily – and we won!  Hmmm… wonder what happened on the rehab side?  When I was in Baylor still in Rehab, I was told I needed to call DARS rehab division as soon as possible to apply and get on the waiting list for the comprehensive rehab program.  I did this.  That was in April. By August I think I finally got on the waiting list.  But by that time almost all that the comprehensive rehab program would have paid for was already done – through a ton of donations and volunteers.  This included things like my home modifications including the addition of an accessible bathroom and closet and purchasing a wheelchair accessible van that I can drive. But at least I was on the waiting list and that would pay for additional physical therapy.  But then one day my counselor calls me and asks me if I think I would rather apply for vocational rehab services since I was already back to work part time.  The point is I DON”T KNOW! That is what they are for… to inform me! Unfortunately, I couldn’t get to the phone the day she called, so she left a message.  And since then I have been unable to reach her – I’ve left her messages.  

So also back in August I applied for other services through an agency called DADS – Division of Aging and Disability Services. They have a program called Community Based Alternatives.  I understand they would pay for someone to come in and help with household chores and getting me dressed.  They would approve so many hours a week.  In August they told me that in a couple of weeks someone would call to arrange an evaluation.  No one called until November! Then the person, who was really nice, just wanted to know if I was still interested in the program.  I said “yes”.  She said services would be available in December and someone would be calling me to set up an evaluation.  It’s January and no one has called.  

A few weeks ago when Richard hurt his back and we could not cook, clean, and get me dressed, it all came to a head.  Stress levels were high.  Our friends came to our rescue, coming in to get me up in the mornings, help me to bd at night, bringing food, doing the dishes, taking out the trash, etc.  But I got on the bandwagon of trying to rouse up some services.  My friend who is a social worker gave me the phone number for the local DADS office and my interest list number – that’s like my account number, essentially.  I called the number and the first option was to apply for services.  That’s not what I needed.  The second option was for people who already had services, and none of the other options applied to me.  I ended up calling back numerous times and trying eat option.  But i never once got through to a person.  It would tell me to call somewhere else “for information” – no doubt more pre-recorded messages.  

Sorry for the rambling… but here’s my point at last….

I’m now paralyzed, my husband is blind, and we can’t get help. But there are plenty of other people much better off than we are physically, and they get help.  They have people coming in to do the very things we need done.  But i can’t even get someone on the phone!  This is ridiculous! I’m not down on people who get services they NEED, food stamps, all of it.  But when we had to fight like crazy just to have our mail delivered to a mailbox at the end of our driveway instead of the community mail box location, which is totally inaccessible,  and now we can’t even get an evaluation…. REALLY?  

This situation makes me understand what parents go through sometimes when they have children with multiple disabilities.  They have to learn to navigate “the system” and what a disjointed “system” it is.  So many acronyms, people, programs, guidelines, etc. Helps me understand what they go through and their frustrations. 

Having said all of that, I know we are very blessed.  It’s just frustrating and a little scary because if something really happened to Richard to where he was unable permanently to do the things he does, The devil tries to make me think I’m going to end up in a nursing home… even though I have a van and am able and do drive myself to work, grocery store, etc.  This has been a real fear of mine.  So yesterday when he re-injured his back, this fear came on me again.  And I almost let it get ahold of me.  But as I drove off to go get some lunch for us, I was like, “Nursing home – my behind! I am not going to end up there!” And after that I have felt more peace about the situation.  But we still do need help.  Time to get back on the phone…