A Fight That Never Ends

Jess has a Medicaid Waiver

It is the foundation of Jessica’s paid support services. The paperwork required to apply for it was so overwhelming that I literally put it off for 6 years. Yes, 6. Relatively speaking, Jess was fairly quickly moved to the top of the list based on her needs. Even then, when she was approved, there was no funding available. Our application was sent in May 2012.  It was August 2014 before we were able to utilize the services.

As part of the waiver, we are required to have yearly ISP meetings, similar to IEPs, as well as visits from ancillary departments such as behavior specialists, nurse visits, and evaluators. Every 5 years we have to revisit the Supports Intensity Scale (SIS) . We also have to do quarterly and sometimes monthly visits with our support coordinator. 

Required Visits

A couple of weeks ago, we had a required visit from a behavioral specialist. This is a person who has been involved in Jessica’s case for about 6 years. This was the 3rd or maybe 4th time visiting our home in those 6 years.

At the beginning of the visit, Jessica said hello to the specialist, chatted for 5 minutes or less. Then, Jess and Marlow left to go run errands. The rest of the visit was just with Hannah and me.

Reevaluations

As a result of that visit, I got a call yesterday afternoon saying that we had to reevaluate a few items on Support Intensity Scale (SIS). Today, a trained evaluator came to do the SIS assessment. Why? Because the behavioral specialist had reported that Jess didn’t need ANY supports for her blindness, skin picking, or risk of wandering. 

That particular behavioral specialist is not trained to do the SIS assessment.  His/her statement regarding Jess not needing support for vision impairment was because Jess was seen walking down the hall and navigating our stairs independently.  Also, the specialist reported that Jess only picks her skin where she has bug bites. This statement is completely false. 

What about Jess not needing support to prevent wandering? Does Jess have a history of wandering. YES! 4 times! That’s 4 times too many. We learned to be constantly vigilant to prevent it happening again.

Blind

I have no idea where the judgement came from about not being at risk for wandering, but I suspect it is related to the unwillingness to believe CT imaging, medical reports, and official diagnoses that Jessica is BLIND. She’s blind. B .L. I. N .D. This also means that Jess is Visually Impaired. All blind people are visually impaired. All visually impaired people are not blind.  (Apologies for the brief rant.)

For those of you who don’t know, part of Jessica’s brain is missing, as in not there. It never was. This is the cause of Jessica’s blindness. Jess is completely blind in her right eye. That eye has no light perception. She has a minimal field of vision in her left eye, and within that limited field, the vision is not clear. Jess can see come colors and shapes, but she can’t faces. Also, I can sit in a different spot that usual and Jess won’t know where I am in our own living room.

Independent Travel

While Jess navigates like a pro at family homes, Jess cannot independently and safely navigate in unfamiliar environments. Jess doesn’t know right from left, or in front of and behind. She can’t see step ups, or step downs, and she can’t see if something is projected out that she might bump her head on, and would trip on something unanticipated in the floor. In the past, even traveling sighted guide, Jess has fallen and broken a tooth, scraped knees and elbows, gotten horrible bruises, etc.

I think the false argument the specialist may have been trying to make was that if Jess independently and without telling anyone walked out the door and randomly started walking away, that she could find her way back home (by herself) because she is only ‘visually impaired’.  In other words, ‘If Jess decided to go for a stroll by herself, what’s the big deal? She can find her way back home.‘   It’s an absurd concept.

Let’s not even go to that place about Jessica being 1000% at risk for being lost, hit by a car, vulnerable to any kind of malicious intent, and unable to tell rescuers her address or a phone number if that happened.

And it goes on and on, deeper and deeper.

It’s impossible for outsiders to independently make an accurate judgment of Jessica’s abilities and needs. That’s why assessments involve parents, family and friends who are familiar with the individuals being assessed.

The kicker is that throughout our visit, the behavior specialist had spent at least half of the time talking about himself/herself, his/her mother and her issues, a brother who was coming to help with the mother who “didn’t have any real issues other than being stubborn,” his/her cats, and his/her upcoming surgery.  Also, during the middle of our visit, multiple times conversation was interrupted while the behavior specialist took time to try to get my cat to come sit in his/her lap (my cat was happily napping in mine).

 I think this next part is key.  Multiple times the behavior specialist compared what I had just stated about Jess to his/her issues with his/her (only stubborn) mother. Completely unprofessional and inappropriate. 

Times like these are so frustrating. 

Thankfully, the person that came to do the assessment today was 100% professional and a wonderful advocate for Jess.  Everything will stay as-is on the original assessment.

This example is just a drop in the bucket compared to what families have to go through to get services. 

It is also an example that the fight never ends.