The Road Ain’t Straight: It’s the Peaks You Wait For!

By Kimm Eckhoff

Transitioning Demi into college began several years prior to her high school graduation.  I approached Vocational Rehabilitation and Demi went through their testing to determine that she would receive services, and that she had the intelligence to realistically pursue a college degree.  VR also suggested she attend several workshops they offer, from college note taking (she can’t use her hands) to leadership.  We did them all and played the game.

What they failed to tell us was that in the end, VR services only help negotiate one’s needs with the university, such as ramps, toileting room, classroom modifications.  The letter written on Demi’s behalf was laughable, as anyone could have documented these accommodations that were already her right through the Americans with Disabilities Act (ADA).

In the background, I began working our Medicaid system.  Every time our nursing agency re-qualified our hours I had them document that when Demi lived independently, she would need at least 14 hours of nursing/day because she used a ventilator when sleeping or resting.  We were initially granted 80 hours/week, which were later reduced to 50.  I knew I would need every one of those hours back to properly send Demi off to college.

Demi’s job was to investigate the area colleges, visit, take the SAT/ACT and apply.  At first she wanted the big university 50 minutes from home.  Then one night around 2 am, her nurse up and left us after receiving a phone call that her dog was sick.  Demi pondered what would have happened if she were 50 minutes away.

In her senior year Demi finally settled on Samford, the private, Baptist school 10 minutes from home. However, no student in Samford’s history had ever used a motorized wheelchair or lived among the rolling hills of its campus.  The dorm rooms were small, their disability services were fairly undeveloped, but Samford pursued Demi and seemed willing and eager to make it work.  I was very nervous.  The alternative local university, a large public school, had several students who successfully used wheelchairs.  But this choice offered no appeal to Demi.  It was too big and too impersonal.  She preferred the faith-based, quaint, homey feel of Samford.  Decision made, acceptance granted, she was set to go.

Now the real work began.  Through our nursing agency, we submitted the additional hours Demi needed to successfully live on campus.  The nursing agency believed that since she used her non-invasive ventilator 16-18 hours/day, Demi needed 24 hour nursing, as she could not anticipate when she would tire and require a break.  However, I found this too stifling and did not want a woman in scrubs next to her 24 hours/day.  We agreed on 14 hours/day as a starting point, for five days/week.  Demi would return home on weekends, as recommended by her pulmonologist, so that we could fully manage her medical needs.

Let me back up and say, during Demi’s freshman year of high school she was bold and asked her pulmonologist about her lifespan.  I was not present, but apparently the conversation went on that he did not foresee her living past age 18, or her sophomore year in college.  Demi was devastated.  We sought counseling and major antidepressants, but there was little we could do to remove these words from her mind.  Occasionally, while considering school options, this conversation would rear its head and Demi would question if college was realistic.  We did not know the road ahead, but faced it head on.

During the summer months we continued to play VR’s games, meet with college officials and disabilities services, and I called Medicaid to request additional hours.  Though I had already involved our Alabama Disabilities Advocacy Program (ADAP) lawyers and state Senator, the Medicaid commissioner called me personally to explain that Demi did not qualify for any additional hours.  In fact, we were fortunate to have the 50 we were granted as there were two adults in the household and I did not work.  It should be explained that my husband, Devin, is director of the organ transplant program at the University of Alabama-Birmingham, one of the two largest transplant programs in the U.S., and usually works in excess of 120 hours/week.  However, his position and my past advocacy connections could not help us.

Demi wrote President and Michelle Obama. She wrote her U.S. Senators.  She wrote.  I wrote.  We called, all to no avail.  In one heated phone conversation the commissioner warned, “If you as her parents can’t care for Demi in the home, she belongs in a nursing home.”  There is no nursing home in this state that can accommodate persons with ventilators.  Therefore, should Demi need to be placed out of the home she would require intensive care at about $6000/day.  On the other hand, the additional nursing hours they refused cost about $500/week.

I was even more determined for Demi to start classes on the first day.  I had been warned that I could be arrested for child endangerment if I left her unattended without the proper care, which the state was mandating but not paying for.  Because of Demi’s severity, although we have excellent medical insurance (excluding night nursing), Demi is a ward of the state.  And thus, they can dictate her care.  I was prepared to be arrested on campus.

Fortunately, Demi was consumed with the exciting details of moving to college.  She had color coordinated her room, met her hall mates from all over the world and was falling in love with her own new world.  She and her personal care attendant (PCA) were thrown into figuring everything out together.  Demi had developed a wonderful friendship with her PCA, who shows up each morning to care for Demi, attend classes, take notes, and basically act as Demi’s hands and feet as they face the challenges of every day together.  Her night nurse has accepted the challenges of a shared bathroom with 17 other girls.  Samford has been riding the learning curve, but has absolutely come to the table.  And I had to threaten VR in the end, but they too came to the table and provided partial funding for Demi’s attendant.

As it rests now, Demi has a nurse 12 hours/day, four days/week.  I pick her up on Friday afternoon, drop her off on Monday morning and park her van on campus so that she and her friends can have the freedom or necessity of travel.  The state still does not recognize Demi away from home.  I really don’t care what they recognize EXCEPT that it is her damn right to live in the community and this is what I continue to work for: that she may live there, like her peers, around the clock should she so desire.

There was a lot of legwork in getting Demi to college.  Transportation alone is complicated and requires duplicates for several pieces of equipment, which I collected from various loan programs, including the MDA’s loan closet.  But it’s worth it.  Her first semester she had to take two of three courses as incomplete, as she fell ill and had her gallbladder removed the last week of class.  Her attendant filmed the classes and Demi made up her tests.  Two A’s and a C.  That’s okay.  College is not as forgiving when it comes to making up school and homework.  We pray for health, especially as we get through this flu season.  She is very aware of maintaining good hygiene and eats well, but lacks sleep.  She comes home each Friday exhausted.

I will say that the downside is that we live on eggshells.  We don’t know when our services will be pulled.  She is expensive to keep at school.  She is expensive period.  We don’t know when she’ll get a respiratory infection and we’ll have to forfeit the semester ($15,000 down the drain).  We don’t know when the next hurdle will appear.  The road ain’t straight, but it’s the peaks you wait for.

Our system is not for the individual, and I had to make it work for her.  Demi’s situation is not 100%, but its pretty darn close to what we agree works for us.  Demi is getting her education.  She is undeclared at this time, but I am hoping she will get her Nutrition Science degree so that she can plan menus from home via computer for institutions, corporations, etc.  She is just getting a taste of it all now, and continues to roll with the punches.

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