My Perspective – Living in the Intellectual/Developmental Disabilities System

By Jeanie Benfield assisted by Jo Booms

I value my Medicaid and realize I’d be in an institution without it. But it’s not enough to create a system to serve people with Intellectual and/or Developmental Disabilities (IDD) and then let it run amok because society doesn’t value the people the system was set up to serve.  I am now lucky enough to have services through excellent agencies – but for most of my life, I didn’t.  Most people don’t have any idea how bad it is in the IDD system. The problems are due to massive problems in oversight plus the system’s refusal to pay direct care workers a skilled-job wage. The wage problem makes it so that people with IDD often have no choice but to receive services from the very people they should most be protected from. When we do come across outstanding direct care workers, we value them – but the system as a whole does not. I have an assistant, Jo. Jo has worked with me for 21 years in various capacities (paid and unpaid). I have a severe speech impairment due to my disability.  Jo is one of only a few people who can interpret for me on the level I need. The system pays her $12/hour to do this. I can trust her with my life, and the system pays her $12/hour.

It is difficult to find great direct care workers who will stay in this field; they’re not paid a living wage and the system makes the job hellishly stressful. The lack of quality direct care workers has a horrible effect on quality of life for people with IDD. You’d think that overseeing agencies would know about these problems – but they don’t, because what the agencies oversee is largely paperwork. If the paperwork’s ok, the overseeing agencies think that means the clients have great lives. What the system doesn’t understand is that what doesn’t make it onto paper doesn’t get reflected in the statistics. Abusive direct care workers aren’t going to write on an Incident Report (IR) that the reason Client A hit Client B is because the direct care worker was rude and insulting to Client A. This is a true story; I’m Client B. Client A is a sweet person whom I love dearly. She asked the worker if she could go trick-or-treating. The worker could have politely and respectfully explained that Client A is too old to go trick-or treating and then said something like, “You’re always so good at helping give out candy when trick-or-treaters come to the door. I was really hoping you could help me out with that”, or the staff could have reminded Client A that she always has a great time at the ARC Halloween party and that she receives many compliments on her costumes. There are any number of ways the worker could have redirected Client A appropriately. But instead, the worker chose to speak to her scathingly. Disabilities don’t prevent people from having feelings. When Client A gets upset, she flails her hands like a toddler. I happened to be in the way. It wasn’t intended as a hit, and didn’t hurt or leave a mark. But the staff counted it as a hit, wrote an IR, and tried to pressure me into calling the police and pressing charges because “Client A needs to know there are consequences when she hits”. I was like, ‘What the hell???’ I refused. The staff got mad, but oh well. I’m not about to press charges against another client because of something a worker did wrong. I told the residential director what really happened, so Client A ended up not being in trouble over it. But when there’s no one to witness or report or when there’s no one who cares enough to take witnesses seriously, clients get in trouble, daily, for crap that staff pull. Many clients are on behavioral programs to address, repress, and extinguish their understandable reactions to being treated like crap by the direct care workers who are supposed to be providing them with quality care. Many of these same clients are on psychotropic meds to make them acquiesce to workers treating them inappropriately on a daily basis.

It’s not right, but officials don’t want to hear about the problems. When clients, family members, and guardians try to tell state-level officials about problems in the IDD system, the state dismisses our testimony as “anecdotes”. We are not anecdotes. We are human beings who, through the blessing of Medicaid, are trying to experience the inalienable rights granted to us by our country’s constitution. Medicaid is a huge step forward in our quest for equality. But existence of the program alone isn’t enough; it must deliver services in ways that uphold the dignity of the human beings it serves.

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.”

Experiences with Medicaid

by Jennifer Roberts

In 1985, when I was in Kindergarten, I was hospitalized for four days. After receiving a support poster from my classmates, a special teddy bear, and lots of finger pricks, I came home with a diagnosis of asthma. From that time forward I carried an inhaler, and I used it 8 times a day. Throughout childhood, my biggest challenge at school was timing attacks so that I could get to my inhaler in the office. If I was at recess, at specials, or in the field, taking these walks felt like an eternity. By the time I got there I was dizzy from lack of oxygen, barely able to move my legs, and struggling to tell the teacher that I needed help. These attacks also happened at home, and forgetting an inhaler, or bringing an empty inhaler, constituted an emergency. 

At sixteen I was prescribed Azmacourt. It used an inhaled steroid to reduce the inflammation in my lungs, and it changed the game. For the first time in P.E., I could run-walk a quarter mile without getting out of breath. During most of my day I forgot that I used an inhaler.

In my 20’s a drug came out called Advair. It combines the inhaled steroid of Azmacourt, with a new medicine that relaxes my airways. It completely replaced my rescue inhaler except for emergencies. Advair is not cheap. The retail price for my current version is around $650, and I use one per month. Two years ago my doctors added a medication called Spiriva, with a similar price tag. I use two per month.  

Asthma was the first of many health challenges, but I can’t step away from it. Planning for health insurance has been a necessity and a constant struggle. My father developed Leukemia my senior year of college. My mother’s plan covered him, but not me. I was punished at my first job review for taking more than two sick days a year. When I left I spent seven years of my life without any insurance, relying on the Colorado Indigent Care program. I returned to work full time in 2009, but even with my employer’s health plan it was cheaper to buy generic Advair from Canada. 

The Affordable Care Act granted me medical care for the first time in 13 years. I am a member of the Cherokee Nation, and as a result I had low premiums, and $0 deductibles. The ACA was implemented right after I was seriously injured and it covered the full cost of several bone surgeries, in addition to covering the full cost of my prescriptions. This helped me keep my home and modest assets.

I lost ACA coverage when I was awarded SSDI. Everyone on SSDI is automatically placed on Medicare, and I was not allowed to have both. Medicare required me to pay back my ACA premium on my taxes, and I retroactively lost cost sharing. With Medicare I was also going to have to pay more than $6,000 for my inhalers. That is about a third of my income. I did not want to go on Medicaid because before my accident I went through the Dave Ramsey financial plan. I did not want to give up my emergency fund because it makes me feel safe and gives me stability. 

CCDC helped me apply for the Medicaid Buy-in program. The Medicaid Buy-in was created through the Affordable Care Act for working people with disabilities. It allows participants to have Medicaid, but keep assets like a retirement plan and savings account. One key is that participants have to be paid to work, but there is no hourly minimum. It is similar in cost to my American Indian Health Plan, and is calculated based on my disability income and my employment income. So far I pay $90 a month for my premium, $0 co-pays for visits and $1.25-$3.75 for prescriptions. 

Getting onto the Buy-in program was challenging. Coloradans applying for ACA coverage have to apply for Medicaid and be denied to qualify. Even though my case at Connect for Health was closed, it was messing up my Medicaid eligibility because I had been denied recently. CCDC helped me get past this. Once I was approved it was easy to use.  I was already on Kaiser with Medicare so I just let them know I had Medicaid too. As soon as my next appointment I did not have to pay a co-pay and I was able to get my prescriptions. Medicaid is supposed to pay for my Medicare Part B premium but they aren’t, and I need to file an appeal. CCDC helps with these. The plan also covers dental at limited locations but I have not tried it.

The Medicaid Buy-in has some limitations. It does not cover seniors over 65. It does not cover people if they cannot work at all. It only covers people with a disability, and doesn’t cover things like the high cost of insulin if Diabetes is your only condition. People who don’t qualify can still lose their assets if they are injured like I was, or get really sick like my father. I am not sure what happens if you have periods where you have to miss a whole month of not working, like when you need surgery. But so far it is a good step. In the meantime I am also working with the Colorado Foundation for Universal Health Care to expand this kind of care for everyone. 

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.”

Goodnight, Colorado

 by Brigitta Hebdron

My son has Fragile X Syndrome, a genetic cause of autism. One of the first challenges we faced was disrupted sleep patterns. He was up crying loudly many nights long after the family was asleep. By the time he was eighteen months old, he shared a room with his older sister. When he awoke, I ran to their second-floor bedroom, swept him up in my arms, and carried him quickly down to my bedroom on the first floor, attempting to keep him from waking his sisters who required a good night’s sleep for school. Once, I dropped him in my sluggish attempt to hurry down the dark stairs in the middle of the night. To this day, that’s the only concussion he has ever had. 

When he finally slept through the night, at seven, and after being on meds for months, I was ready to throw a party! A “sleepover” with one guest… me! We didn’t live in Colorado during most of those early years. When we moved here, I was shocked to find out that, after years of dealing with the exhaustion of disrupted sleep, his acquired ability to sleep through the night could have prevented him from qualifying for the CES Waiver. 

The Code of Colorado Regulations found on the Colorado Secretary of State website states the following about CES Waiver Eligibility: 

“The individual demonstrates a behavior or has a medical condition that requires direct human intervention, more intense than a verbal reminder, redirection or brief observation of status, at least once every two hours during the day and on a weekly average of once every three hours during the night.”*
*10 CCR 2505-10 8.503.30 (pp.60 8.a)

So, if you have a child with disabilities, regardless of diagnosis, severity of needs, physical or behavioral challenges, if he does not require you to be up with him every three hours during the night he doesn’t qualify for a much-needed waiver, according to the State of Colorado? Yep, that’s right. Regardless of the child’s cognitive or adaptive IQ, regardless of his daytime behaviors, regardless of incontinence, vomiting, or seizures. 

I am not an expert in all disabilities, but I am an expert in being a mom of kids with special needs. I think I can easily speak for all of us when I say, at the very least, it’s an exhausting life, even on the best days. Often, our only respite comes when our children finally go to sleep. My son is eighteen now, and l still threaten the life of anyone who wakes him up after I finally get him to sleep. I have spoken to many moms of children with disabilities, sometimes truly debilitating disabilities, who say their kids sleep through the night. Isn’t that the mark of good mommying, when children are comfortable and sleeping soundly in their own beds at night? 

To add salt to this wound, I have been advised that wakefulness due to incontinence “isn’t enough to fulfill the state’s requirement.” What? You’re joking. It wasn’t enough that he was up, and I had to repeat the bedtime routine as I cleaned him up, made up a clean place for him to sleep (admittedly, not always his bed, sometimes just a palette on the floor,) and get him to calm down and go back to sleep at 3AM? Bed-wetting wasn’t a good enough reason? 

This narrow, archaic, and frankly, uneducated policy that is strictly enforced in Colorado must be revised. Disabilities are as diverse as all the people on earth. What affects one, does not affect all, even among those who have the same diagnosis. Not all kids with autism have disrupted sleep patterns. Many, like my son, experience that symptom when they are young, but eventually manage it through meds. 

I tried to research the history of the CES Waiver to figure out how this policy originated. I found nothing on the internet. So, who decided it? And why? Why sleep? Why not seizures, perseverating, incontinence, immobility, IQ, etc? I could go on and on… What determines which “symptom” should outweigh the others? My dear friend, whose son is nonverbal probably wouldn’t trade places with me on the day my son put his fist through my windshield. Whose need is greater? If both boys sleep through the night are both families undeserving of the interventions the CES Waiver enables? 

Dear Colorado Medicaid, it’s 2019, we expect you to contemporize your views on raising children with disabilities. The one thing families like mine deserve is a good night’s sleep!

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.

Medicaid Blog

Introduction

My name is Nicole Bishop and I am a volunteer disability advocate and social worker currently employed at AllHealth network working with at risk teens and young adults experiencing first time psychotic episodes. I live independently with my family including my two-year-old son, and partner. I also am diagnosed with Spinal Muscular Atrophy type 2 which is a neuromuscular condition under the larger umbrella of Muscular Dystrophy disorders. 

I would consider myself a success story in many ways. I have successfully lived independently, having my own apartment, caregiving for my child, and completing a master’s program with a 3.95 average. However, being disabled means that I must fight and advocate to provide myself with the needed resources and supports to maintain a comfortable independent quality of life. This includes accessing Medicaid services for basic daily living.  The current services I access through Medicaid include the Consumer Directed Support System (CDASS), durable medical supply coverage, and primary care doctors. I am also considered a “pickle” which means I qualify for Medicare services as a primary insurance and Medicaid as a secondary. This was not a requirement but I decided on adding in Medicare when asked by a case manager, at that moment of decision the faces of countless receptionists, and doctors flashed across my mind “oh you’re on Medicaid….I see”. The passive aggressive judgment of being on the “poverty insurance”.  

The love-hate relationship of Medicaid

Despite some struggles with Medicaid, I am eternally grateful for the program that I am currently qualifying for, Elderly, Blind, and Disabled (EBD) waiver. Through EBD I access CDASS and self-directed care which allows immense independence. I am free from the chains of home health companies, free from the dangers of the chaos of unknown caregivers, free from rigorous agency schedules, free to choose who comes into my own home, free to compensate family members for caregiving they are already providing, free to work, and free to become a mother, a longtime dream of mine. What does Medicaid mean for me? Freedom. However, having the supports in place that I do now does not mean that this comes easily. Adding in supports was an uphill advocacy battle involving education, learning self-worth, and connecting to the community. Initially through CDASS I was given a low budget that did not meet my caregiving needs. I can remember a filthy apartment, bed sores, depression, and illness. Thankfully I had friends within the disabled community who helped make the connection to first ADAPT and then Colorado Cross Disability. At ADAPT I learned of the disability rights movement and it ignited inside me the spark of worth. I am worth being care for, I am worthy of happiness and to have my needs met. After taking the advocacy class through CCDC I learned how to advocate within the Medicaid system and knew I could make drastic changes. I was assigned an advocate Donna Sablan who advocated on my behalf. Through a four-year struggle, totaling 225 prescriptions of proof of what I was already entitled for, I was given appropriate caregiving services. From then on, I have become passionate about advocacy, advocacy for myself and advocacy for others. I hope to continue into the future the gift of advocacy that was given to me. There is so many more boundaries that advocates must break through within Medicaid. As a community we can be and are successful in this. “nothing about us, without us!

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.”

Join Us to Celebrate The Passage of HB 19-1269, The Mental Health Parity Insurance Bill

Colorado Coalition for Parity

Join us to celebrate the recent passage of HB 19-1269 The Mental Health Parity Insurance Bill

September 20th 2019
10:30 AM– 12:00PM

Addiction Professionals Day
Tivoli Film Center
University of Colorado – Denver – College of Arts and Media
Auraria Campus
901 Larimer St. Denver, CO 80202

Special recognition of the legislative bill sponsors
Meet Colorado’s new Ombudsman for Behavioral Health Care Access

Refreshments

The Denver Reel Recovery Film Festival
Presented
9/20/19
Tivoli Film Center
Immediately following the
Parity reception

SAVE THE DATE!
9/21/19
AFR Colorado Hosts:
RALLY FOR RECOVERY
Denver Civic Center Park