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Category: Medicaid Blog

What I Like and Don’t Like about Medicaid

by Dale Buterbaugh

My name is Dale Buterbaugh. I have the opportunity to serve on various  statewide Health Care Policy and Financing committees as well as some local committees.  I must say that I have learned a great deal and even shared a few ideas as well, They all have been very receptive and encouraging at the same time. What do I like and don’t like about Medicaid? Boy I really had to think about this and how it has either been good or what I think could change with the Medicaid system. This is hard as I am trying to think not just about myself but of others, too. I have been on Medicaid most of my life, and like any system it does have its ups and downs. It saddens me that some of the much needed medical care stops for those who are over 18 and then picks up again with people over 60 but with a lot of restrictions so to speak, like i could get my eyeglasses paid for or hearing aids etc all that till I turned 18. Much of this is still needed throughout my adult life. Right now I have no way to afford them unless I can solicit donations or foundations like Easter Seals or Hear Now to help me off-set the cost of the hearing aids . I wish all individuals could go for 30 days without hearing and see how it affects you when you lose the ability to hear.  When it comes to glasses, they are considered a luxury for me as I can not afford them and it takes me a long time to save to get a pair.

 

 I hate that not just Medicaid but most all insurance systems require prior authorization to get some services which  could mean the difference between life and death for some people, I guess that we could be thankful that if a person is having a heart attack that we can be seen right away. Someday that could change and we might have to call the dr a few days ahead and, say hey, “Doc I think I am having chest pains, I need appointment ASAP.” Or have the fear of doctors turning you away because you have Medicaid and not Blue Cross etc.. I will say thank you to Medicaid for the fact that my sister is a leukemia survivor and has been cancer free for a long time now. There are times that she feels that either she owes something back or has taken advantage of a system that without it, she would not be here with us today. She just feels like she should have died and not take the medicaid help. It did save her life. I am thankful and grateful for Medicaid helping her. 

 

I could have used some short time long term care services during my time of healing from a recent surgery to repair my Achilles’ tendon. Help to get around town to be independent and get out of the house, but I could not afford the rides nor do I qualify for the service. I just stayed  home and watched TV all the time. I am not able to get out and exercise inorder to be in better health But at the same time I do not qualify for that type of services which saddens me and frustrates me. That I have to give up my freedom just because I can’t afford or get help that I would like or feel that I need. People that run the insurances say “Oh you had a common illness so therefore we are going to limit your care and needs”. But in reality it does not work that my life should not be compared to the theory if  there’s one bad apple then the whole bunch are bad etc. I am an individual not a whole group, so please don’t treat me like I am a group and not a person

Medicaid Buy In for Working Adults with Disabilities

by Cara Jean Reimann

I am one of many Colorado residents who has had health insurance only sporadically. While I am a supporter of the Affordable Care Act, the premium costs and deductible charges were prohibitively expensive for me to have consistent access to health care. I think Congress caved too much during those days and allowed private insurance to dominate the narrative about health care. 

In 2018 during a period of time when I was uninsured, I had a medical crisis and went to the emergency room at Denver Health. I received amazing care there, including surgery and 10-day in-patient stay. My last day there, a woman from Enrollment Services came to my room and talked to me about my situation. I had been thinking I would have to go sell my house and live on friends’ couches while I deal with my cancer diagnosis, but she determined that I qualified for a Medicaid plan! 

I was unable to work regularly for several months while I underwent cancer treatments and recovered from my surgery. I am now working again full-time, but I require medical supplies for the rest of my life, and cancer screenings are part of my regular health care, too. CCDC’s advocate Donna Sablan helped me navigate Colorado’s Medicaid rules and found that I qualify for Medicaid buy-in, since I’m now working full time. 

I have always been a strong supporter of Medicaid expansion, and I hope everyone will someday be able to use this amazing program. I support Medicaid for all, regardless of where people live, and Medicaid buy-in should benefit all people who want to use it, not just people under the age of 65. 

**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.

‘The system is broken’: Medicaid buy-in age limit forces disabled to become impoverished

By: Jaclyn Allen

Picture of Curt Wolff working on his desk, using a tablet

DENVER — It is a terrible choice: either give up on work or lose the health care needed to live. For a small group of Coloradans, it is a choice that looms large as they approach the age of 65.

“I really want to keep working. I enjoy it,” said Curtis Wolff, who became a quadriplegic seven years ago, after surviving the West Nile Virus. “I am still able to do a lot of things. I am a trainer for a contractor for the State of Colorado.”

But certain health care expenses aren’t covered by insurance, including wheelchairs and personal care. Fortunately, Colorado has a Medicaid buy-in program for working adults with disabilities,which allows Wolff to keep making and saving money and still get Medicaid benefits.

But there is one major problem: the program ends when people turn 65 years old.

“This program is only good until age 65, and I can’t even retire until 67 in the first place,” said Wolff, who said that even after that, Medicare will not cover long-term care expenses and other benefits that Medicaid does.

If he wants to keep receiving Medicaid after he turns 65, he has to get rid of all assets over $2,000.

“Really, after working hard you whole life you basically have to lose everything in order to just survive. It’s just not fair,” he said.

Josh Winkler with the Colorado Cross-Disability Coalition (CCDC) said federal lawmakers probably assumed people could get on Medicare at 65 or that many with disabilities would not live past that age.

“As set up right now, the system is broken,” said Winkler, who said a bill drafted at the federal level to change the 65 age limit has gone nowhere. “I know several people who have worked for 20 plus years with their disabilities, and their plan is to die before they turn 65 because they don’t have a plan at 65.”

CCDC is looking for a state solution, allowing people to keep working, keep their assets and keep buying in to Medicaid if they have already been part of the buy-in.

Nearly 9,000 people take part in the Medicaid buy-in for working adults with disabilities, but Winkler said that probably only a few dozen Coloradans would need the age limit extended beyond 65.

Winkler and Wolff believe it could save the State money in the long term, and CCDC is working on drafting legislation at the state level and finding a lawmaker to sponsor it.

“Something needs to change,” said Wolff, who is about to turn 63 and just hopes the change happens in time for him. “I might have to go to a nursing home and that would be the worst-case scenario and I really don’t want that to happen.”

Original Article by Denver 7 TheDenverChannel.com

A Door Opener

by Haven Rohnert

After a decade of being a stay at home parent, when I was 19 to 29, my children’s mother and I parted ways. It was the first time I had to survive on my own, with complicated medical conditions, hundreds of miles away from close friends and family. 

I got on a hospital’s program for people with low incomes, which provided me the minimum medical treatment to survive. When I secured SSI, during these rough times, I received Medicaid which gave me better coverage, to combat my disabilities.

I stopped having the type of seizures which caused me to wake up in the hospital many times. I still had 3 to 5 partial seizures a week, so I and my neurologist discussed surgery as an option. 

I had my first surgery and that stopped every type of seizure, for over a year. After I started having symptoms that felt like a seizure could come on but never did, we discussed having a second surgery. I had the second surgery. In about a week, I will have a hospital stay to see if it’s safe to start tapering off one medication at a time. We started tapering of one medicine approximately 7 months ago, but I had reactions which may be seizures or possibly just withdrawal symptoms. Being monitored in the hospital will let doctors and I know what causes the reactions.

Through all this, Medicaid has been by my side and has kept me safe and provided treatment that I couldn’t afford with other insurance. Medicaid has also been great for preventative treatment that has allowed me to raise my kids and work safely for over 11 years. With Medicaid’s 1619 B program, which allows people with disabilities to keep their insurance, after surpassing the income limit, if a person cannot work without the coverage, I was able to work my way off all other government benefits. I am happy to pay for my insurance now, through the Medicaid buy-in program. Medicaid is a lifesaver and a door opener. 

**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, the Good and the Bad

by Kristy Arellano

My name is Kristy and I am a volunteer advocate for Colorado Cross-Disability Coalition.  I am also a mother to daughter with a severe brain injury who requires 24/7 care for all her needs.

When I was little we did not have healthcare insurance.  I remember going only once to the doctor when I had a bad case of strep throat.  We rarely went to the dentist and for the most part we all were healthy and able to avoid needing health care.  Looking back now I realize we were poverty level and very well could have qualified for government services.  We never wanted for anything as my mom was a careful shopper who frequented thrift stores for most of our clothes and worldly goods.

Fast forward to May 2013.  I was a working mother of three when my daughter was permanently injured during a suicide attempt.  She lost oxygen for an undetermined period of time causing a severe brain injury.  She spent a total of about 8 months in the hospital during the first couple of years after her injury. At the time we had Kaiser insurance through my employer.  

I had no idea how we were going to make it through such a tragedy, emotionally or financially but I knew we wouldn’t give up!  I remember receiving a letter from Kaiser during the first hospital stay, which lasted 4 months, stating we had exhausted our rehabilitation services.  I remember the terror I felt at that moment knowing we could not possible care for our daughter on our own.  I was scared the hospital would refuse to continue to treat out daughter and that we might be discharged with a 14 year old that needed round the clock care just to survive.  Insert a hospital case worker.  She explained that our daughter would qualify for Medicaid based on her disability.  After jumping through the required hoops and getting misinformation about a variety of waivers we eventually navigated our way through the process to get her set up in the system.  

She is now days away from turning 21.  Her health has improved, but she still requires 24/7 care to ensure she doesn’t end up back in the hospital. I am so thankful for everyone who went before us to fight for these benefits and for those who continue to fight for them.  I still struggle with resources to navigate the changing landscape as she moved from children’s services into adult services.  Currently we have 22 hours daily approved nursing that decreases to 16 hours once she turns 21 because magically as an adult she will no longer need the level of care that she once did, right?It is a constant challenge to find and keep qualified nurses to care for her and never have we had staffing for all the hours she has been approved for.  Low wages and minimal employment benefits through the agencies make home health nursing jobs less desirable then what hospitals and other institutions can provide.  We are consistently scrambling to find ways to supplement what she needs by what’s provided.  

Medicaid has been a huge blessing to our family.  With Medicaid we have been able to bring our daughter home and for the most part have the supplies, medication and services that we so desperately needed to continue to care for our daughter.  We have learned about state Medicaid and strived to educate ourselves about the variety of waivers she has been eligible for throughout the years.  It has been a huge struggle to educate ourselves to make the best decisions about what she needs and then to advocate so that we can get the right medical equipment, in home assistance for care, medications and daily supplies.  I had to quit my full time job just to manage her care and ongoing needs.  I fight weekly with providers, insurance and/or Medicaid to ensure she has her basic needs met.  While it’s not a perfect system, I don’t know how we’d manage without Medicaid to give our daughter a comfortable meaningful life at home, where she belongs, with her family.

**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.

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.”

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.”


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