Five years ago, our son Isaac was diagnosed with SMA Type 1. He was four months old, and I remember talking to my family about the implications of the diagnosis. We went from coming to terms with the knowledge that Isaac would likely spend his life in a wheelchair to realizing that his prognosis was much worse than “he’ll never walk.” He would not sit. He would not eat. He would not swallow, speak, turn his head, move his hands. He would not breathe on his own. He would not likely live to see his first birthday. There was no cure. There was no treatment. All the while, he would be the sweetest, happiest, brightest little boy. We were devastated, and, even today, that word does not capture what we really felt. We prayed he would live long enough for his older sister to remember him. We prayed that when his time came, we would all be there with him.
But Isaac did live to his first birthday, and then to his second. He loved reading books and playing with switch activated toys, coloring with his sister and swimming with his daddy. He started vocalizing to communicate, and talking and playing with his eye gaze activated communication device. Fast forward to his third birthday, a few months after the FDA approval of the first treatment for Spinal Muscular Atrophy (SMA). We knew it would not be a cure, but we hoped it would keep him from losing what strength he still had. Isaac received his first doses of the drug and promptly started turning and nodding his head. He gained strength in his extremities. He started working with his physical and occupational therapists to sit upright with support and to operate a joystick. As he outgrew his medical stroller, we started talking about a power chair. All of his physicians and therapists agreed that he could manage it, that it would benefit him, and his friends at school started getting excited to race him on the playground!
When he was three and a half years old, Isaac completed his first power chair trial at NuMotion. He was amazing! We knew the insurance process would be long. Since we had such good experiences with his Medicaid in the past, we were not overly concerned. We celebrated Isaac’s fourth birthday. NuMotion provided Medicaid with additional information. Medicaid was slow to respond. Finally, more than a year after his initial trial, Medicaid officially denied Isaac’s power chair. The only problem was that they never told us. We waited and waited for a reply from Medicaid, and finally we reached out to CCDC for help. CCDC Non-Attorney certified advocate and graduate student intern, Nicole Bishop, was assigned to our case, and from the very start, I knew we were in good hands. She was completing her internship and had additional support from what seemed like the entire CCDC staff. I remember that it was around Christmas time when we started the appeal process, and Nicole had some serious digging to do. She discovered that the chair had been denied, and then she filed for improper notice of denial. We celebrated Isaac’s fifth birthday, then we set a date for the court hearing. We began gathering evidence that Isaac could drive the chair, and that he would be able to drive it in all of the needed environments. NuMotion bent over backward to get Isaac a demo chair for us to take home for a weekend. We took so many videos of him driving!
When we had about a week left to gather documents and evidence and compile a witness list, Nicole called the court to verify the best format for submitting the videos. Late that Monday afternoon, she learned that, since we were sending videos, the court would really like all of the materials by Wednesday. Nicole and I allowed ourselves a moment of panic, but then we put our heads down and pushed on. I spent the night editing videos and sending pleading emails to Isaac’s medical team for them to rush their letters of support by the next day instead of the next week. Every single one of them responded with the letter, some of them arriving in my inbox after midnight. The next morning, as I sent Nicole yet another email (seriously, you should see the chains we had going), I noticed that her last email to me had been sent at 4:30 a.m. She had stayed up all night, literally, to prepare Isaac’s case. I was overcome with gratitude at the lengths people would go to in order to help Isaac. And we did it, we submitted everything in time! Then we waited.
Just as Nicole was starting to prepare all of the witnesses for the court hearing, we heard the best news. I opened my email, and there, in the subject line, “We won!” I opened the email, read it twice, and screamed! I ran to Isaac and told him that he was getting his power chair. He shrieked with joy, his sister shrieked with joy. My husband came in to ask what was going on, and he sighed with such relief. I cried when I heard that two other children had their chairs approved along with Isaac. We would not have to go to court because the evidence we had gathered was enough to convince Medicaid that Isaac could and should drive a power chair. Nicole, and her mentors at CCDC, were exactly who we needed to help Isaac get his chair, and for the first time in his life, a measure of independence.
This past week, we went to pick up Isaac’s power chair. It is his favorite color, bright orange. He is practicing every day so that he can safely drive it independently. We can’t wait to see where it takes him!
This was a busy session as is typical whenever there is a new administration and many new legislators. Despite some unfortunate partisanship that caused delays, the reading out loud of 2000 page bills, hearings that occurred during a blizzard, and overnight sessions some great work did get done that will benefit the people of Colorado including people with disabilities.
Before talking about the bills, I want to call out the amazing CCDC team that worked at the Capitol this year.
CCDC wants to thank our many partners, in particular the Arc of Colorado, Arc of Aurora, Arc of Adams, the Colorado Center on Law and Policy, the Colorado Children’s Campaign, 9-5 Colorado, ACLU of Colorado, Colorado Senior Lobby, Disability Law Colorado, Colorado Common Cause, PASCO, and Accent on Independence Homecare amongst others. We also want to thank Colorado Capitol Watch for a great product that made tracking the bills easier.
Because this was a year with many new legislators and many groups rushing to push through bills that had struggled in years past, many of which were bills we were going to support, CCDC made a deliberate decision to NOT run our own proactive bills this year but to focus on our coalition work, and building relationships with the many new Senators and Representatives. We laid groundwork for policies we want to promote over the next few years while focusing on the many coalition bills and responding to bills that affected our community. We followed 139 bills. This report shares the highlights-not every bill that we worked on during the session.
This is being dubbed the year of the renter. There were many bills that helped renters, along with some that will fund affordable housing.
THERE WERE A NUMBER OF BILLS RELATED TO THE COST OF PRIVATE INSURANCE AND HOSPITALS. PLEASE CHECK OUT THE COLORADO CONSUMER INITIATIVE OR THE COLORADO CENTER ON LAW AND POLICY FOR REPORTS ON THOSE BILLS.
Overall it was a good year. There were some disappointments, but there always are—now we have to make sure the bills we like get implemented and make sure people know about these new laws and programs.
CCDC wishes congratulations to our new Governor Jared Polis and looks forward to working with this new administration. Our expectations of a new governor are clear and doable. We look forward to advancing the rights of people with disabilities so that we can show our capabilities as full citizens. This means a dramatic increase in the number of people with disabilities who are employed. This means a dramatic improvement in the high school graduation of students with disabilities and making sure that students go to college or some sort of vocational program. This means a government that values people with disabilities by having high expectations and providing appropriate supports. This means a government that involves us at every level…on boards, commissions, as employees in state agencies, and on the transition team. Governor-Elect Polis stated last night that his administration will be inclusive. We expect to be part of this inclusion and to have disability representation in historic proportions and stand ready to help make that happen.
CCDC congratulates all of the representatives and senators that won their seats as well and we look forward to working with all of you on these same goals.
We will be solidifying legislative priorities for the next two years soon but among them will surely be:
1) Increasing protection for renters such as statewide source of income discrimination protection and habitability laws.
2) Extending the Mediciad Buy-In for Working Adults with Disabilities to people over the age of 65 and for more than 10 days in between jobs, even if we have to use state funds. With the federal government giving the states carte blanche we should be able to get approval.
3) Getting safety protections for people living in host homes.
4) Consumer direction for all HCBS services.
5) Improving our case management systems, especially transition from institutions.
We will be focusing on money for solid transportation that has a focus on transit and affordable housing that is inclusive of everyone including those with very low income. We will be working on increased accountability around behavioral health and overall health care in the Medicaid program.
On a federal level with the Democrats having a majority in the house, we will be holding Congresswoman DeGette accountable for her promises to us to fix the Electronic Visit Verification mess and exempt consumer direction and family caregivers. We will also expect help with improved access to quality complex rehab equipment (power wheelchairs) including accountability for repairs.
While Colorado definitely went blue, this does not mean that CCDC will stop working with our Republican allies. We have always been and always will be a bipartisan organization. Our issues cross both parties. Disability does not discriminate.
CCDC was very proud of the VERY STRONG voter turnout in the disability community. Approximately 90% of our members had already voted before Monday and we are sure the rest voted Monday or Tuesday. Voting is the first step of realizing NOTHING ABOUT US WITHOUT US.
Despite a plethora of resources dedicated to case management, there is no true single case management system for those with high needs. There are fragments in some systems for some issues but they do not address holistic needs. There are case management systems that are really gatekeepers for government programs. Gatekeeping has its place but it is different than case management. Despite the many areas where case management is covered (even just in the Medicaid system) there has never been a process whereby the stakeholders and government get together to at least have dialogue, if not answer the following questions:
1) Who needs what level of care management across systems? What percent are likely permanent needs?
2) What are the specific tasks needed and how much time will this take on average?
3) What are the qualifications to do these tasks?
4) What are the quality measures to assess the performance of these tasks?
5) What is the cost to perform these tasks including maximum caseload size.
6) What are the total resources now dedicated to all case management?
7) What case management are we doing now that is not useful, not necessary, or could be done at a lower level?
8) How do we create a plan to take our current system and transform to a system that provides intensive case management where appropriate and reduces services where there is no benefit?
Case management is needed in the following situations:
*People with a serious but temporary medical condition or new illness, such as cancer for help accessing and coordinating medical and other resources.
*People with long-term disabilities who are unable to do their own case management and who have no family able to assist. This must be comprehensive and include non-medical issues even the mundane daily life activities that can overwhelm some people. Even dealing with a utility company or a landlord can require assistance for people with some disabilities.
Some individuals could learn to do more of their own management with teaching (or have a family member able to take over with some training) and others will need this high level over a lifetime.
This is not a huge number of people, but the lack of case management causes them to spend a lot of time in crisis and use emergency resources from multiple organizations. Case management of this type is labor intensive and requires a very low caseload and high level of training.
This blog has interesting and depressing statistics about health care debt for our country. The main site also has some good information on credit cards, which are good, which are not, and how to think about using them. Of course most of us do not have the luxury of deciding which credit cards to use, and low-income people are often left with only the worse options (high interest, poor terms, etc.) However, now that we have the Medicaid Buy-In option and more of us are able to get and keep jobs, as we get out of poverty we can learn about things like credit card choices.
Anyway, the health care debt issue is something important.
RAE Contact Information and Area Map
|Region||Regional Accountable Entity||Contact Information|
|1||Rocky Mountain Health Plans||Email: firstname.lastname@example.org|
|2||Northeast Health Partners||9925 Federal Drive, Suite 100
Colorado Springs, CO 80921
|3||Colorado Access||Amber Garcia
|4||Health Colorado, Inc.||9925 Federal Drive, Suite 100
Colorado Springs, CO 80921
|5||Colorado Access||Amber Garcia
Phone: (720) 744-5487
|6||CO Community Health Alliance||Phone: 303-256-1717 (Local) 855-627-4685 (Toll-Free)
|7||CO Community Health Alliance||Phone: 303-256-1717 (Local) 855-627-4685 (Toll-Free)
By Julie Reiskin
October 11, 2017
Recently I was in a discussion with someone about health care policy, and there was shocked silence when I shared that CCDC does not support Medicare for All, and that we did not support Amendment 69 during the recent fall elections. “Aren’t you the people always protesting and carrying on about health care?” Yes-we are. “Aren’t you the ones that are most damaged by pre-existing condition exclusions, lifetime caps, etc., problems that a Medicare for All would solve?” Yes and No. We are most damaged by regressive policies such as pre-existing condition exclusions and lifetime caps—but NO-Medicare for All will not solve the problem.
Medicare is a great program -for basic health care like going to a doctor, getting a blood test, etc. We also absolutely want everyone, disabled or not, to have health care they need. However, Medicare only works today if you are healthy and have either Medicaid to go with it, lots of money, or can afford an excellent supplement. Moreover, Medicare has the most regressive policies that trickle down in a horrible way, making most health insurance unusable for people with disabilities. To top it off, Medicare does not cover what people with significant disabilities need most—which is long-term services and supports.
During our endless national health care debate during 2017, I have wanted to scream at the top of my lungs “I don’t need insurance, I need Medicaid.” Since screaming at the top of my lungs only serves to irritate my family or my staff (depending on where I am while screaming), I tweeted it a few times.
Why Medicaid for All instead?
Why Medicaid? Isn’t that the program for poor people—the horrible program that has no good doctors, where you have to wait forever to get anything done? Isn’t that a program with endless red tape?
No program is perfect, and we work closely every day with the Colorado Department of Health Care Policy and Financing or HCPF (pronounced hicpuff) to make it better. However, for our community Medicaid is the best program, and we want it for everyone. Allowing anyone to buy into Medicaid on a sliding scale rate would make the problems with Medicaid go away. Medicaid has a better benefit package, less red-tape, greater efficiency and much better policies than Medicare. At least in Colorado, this is the case. Medicaid is a federal-state partnership so the federal government sets some of the rules but states have flexibility. When a change is needed for any reason, including a change in medical technology, a change in known best medical practices, or the realization that a rule is making things worse not better, a change happens at the state level. With Medicare, a change requires an act of Congress—and we all know smoothly and effectively the U.S. Congress is working these days. Making a change at a state level usually requires bipartisan support at some level, public input and comment, showing budget neutrality, and going through a process. Change is not immediate but it is possible.
A few other differences:
1) Medicare covers 80% of medical benefits. If you are poor enough to have Medicaid, then Medicaid covers the other 20%. If you are rich enough to afford a good supplemental, then that pays the other 20%. Other people are stuck either with an insurance company that will (maybe) pay the 20% but will restrict what doctor and hospital you can use (along with numerous other impossible rules). Or these other people hope for the best and pay the 20% themselves. As long as one is healthy and has a reasonable income, this works. As soon as one is sick, it does not work. 20% of a lot is still a lot.
2) Medicare is incredibly bureaucratic and complex. The country is divided in regions, and Medicare contracts out “coverage decisions” for various benefits to insurance companies. There are “local coverage criteria” that are very hard to find and they may vary by region in some cases. Medicare rarely pre-authorizes anything. Patients get services; providers are expected to provide care. Weeks or months later, Medicare will decide what portion of this they will pay and what portion the patient must pay. They often deny services because they do not meet some abstract and hidden criteria. Medicaid applicants and recipients, on the other hand, have a right to appeal ANY adverse action. Medicaid recipients can even file an appeal if the agency does not act on a request in a reasonable amount of time. While a Medicaid appeal process may be a bit intimidating, there are people to help and even if you cannot find help, the state office of administrative courts tries to be fair to unrepresented parties. A Medicare appeal process is completely impossible and not even granted for every form of denial. Medicaid has timelines for all sorts of decisions—Medicare has no such timelines.
3) Medicare has antiquated and discriminatory requirements. The worst one is the homebound rule. This applies to home health care and durable medical equipment. This rule basically says that Medicare only covers this service to the extent the beneficiary is homebound. This means the person rarely leaves their home (except for medical appointments) and it requires great difficulty to leave the home.
This is the rule that drives many people with disabilities who have worked and paid into Medicare into Medicaid. With medical technology today, very few people are truly homebound.
Without Medicaid, people with disabilities on Medicare are denied necessary services. They cannot get a wheelchair that works outdoors, because Medicare only covers the kind of wheelchair needed for use in the home. People then get indoor chairs, but use them everywhere and get hit by cars, have the chairs break constantly, etc., because the chairs are not made for real use. Similarly, people with only Medicare are often denied home health care and what they can get is very much in the medical model. To add insult to injury, Medicare sets the stage for insurance; most private insurance companies follow Medicare rules regarding the homebound requirement. It is common medical knowledge that people who stay at home all of the time are less healthy than those that have an active life. Moreover, it is discriminatory and adds to isolation and segregation of people with disabilities. Because Medicare is a federal program, the American’s with Disabilities Act does not apply. Fortunately, the Olmstead Decision in which the Supreme Court said that state and local government programs must work to avoid policies that cause isolation and segregation of people with disabilities because they understood that isolation and segregation ARE discrimination. The ADA requires state and local governments to modify policies, practices and procedures to avoid discrimination – hence, they may NOT impose homebound criteria.
4) Medicare has no long-term services and supports. They do not even pay for nursing homes after 100 days (not that we want nursing home care). There are no services such as personal care, homemaker, supported employment, residential support, transportation, home modification, etc. These services are essential for people with disabilities to function in the community at the highest level of independence. Medicaid is the ONLY “insurance” that provides these essential services. While each state is different, all states offer some long term services and supports. We would support a national requirement for a basic level of LTSS. Most states allow for at least some “participant direction” of services. In Colorado, this means that some clients are allowed to control who comes into our homes, touches our bodies, and has access to every detail of our lives. We are given a budget and must live within it. Within the budget, we can decide what our aides are paid, when they should come and what they should do. This is much preferred than having an agency make these decisions and try to get numerous people services usually desired at the same time. Medicare has no such flexibility (of course they do not have any personal care benefits either).
Additional differences between Medicaid and Medicare and why CCDC advocates for Medicaid for All as the discussion of health care reforms ensues in America in the months to come will be covered in Part II of this blog next week.