The Arc Chapters, and other important advocacy agency partners including Colorado Cross Disability Coalition, Family Voices and the Colorado Center on Law and Policy, began meeting in November with HCPF. Meetings were initiated in response to their electronic (database) system transition and the critical concern that complete information in relation to children and adults with disabilities did not transfer over from the old to the new system.

Arc chapters and other advocacy agencies began to receive complaints where children and adults receiving LTSS received notice they were no longer eligible for LTSS. As a result, Colorado restarted Medicaid eligibility redeterminations for all Medicaid enrollees, including children and adults receiving Long Term Services and Supports (LTSS). Additional issues addressed included the confusion around the rollout of phase I case management redesign and desire to limit any disruption for people receiving service in future rollout phases.

More recently, we also addressed the serious problem of providers not being paid due because of the database transition.

February 27 Colorado Center on Law and Policy and advocacy agencies met with HCPF to discuss concerns. The Colorado Center on Law and Policy provided advocates an opportunity to discuss concerns; advocates asked that HCPF put a pause on (disability) Medicaid eligibility, phase II rollout of case management redesign and to determine why providers are not getting paid and to fix the CCMS.

February 28, 2024 HCPF said:

The Department of Health Care Policy & Financing (HCPF) recently became aware of an unintended occurrence specifically impacting LTSS members that resulted from a system update. The occurrence resulted in a subset of LTSS members being scheduled to have their coverage terminated as of February 29, 2024. HCPF is implementing a system workaround, which will reinstate and keep impacted individuals covered until an appropriate resolution is found for their case. We will be issuing new notice of action letters indicating an approval effective as of March 1, 2024 to all members who were impacted.  Electronic messages to impacted members are scheduled to be released Thursday, February 29 and USPS mail communications are scheduled for release on Friday, March 1.

The Arc chapters continue to come back to the table to resolve issues with HCPF, but we are ready to escalate issues and stand firm advocating that HCPF pause and make things right for our communities of individuals with disabilities. In addition, we have reached out to the Governor’s office for additional intervention should it be necessary.

If you have questions or concerns, please contact your local Arc chapter. We stand ready to make sure your concerns are heard and to provide advocacy for and with you where we can.

¡Las cancelaciones de Medicaid deben detenerse!

Como probablemente sepa, muchos miembros de nuestra comunidad han experimentado daños significativos debido a la convergencia de tres actividades principales dentro del mundo de Medicaid: el fin de la emergencia de salud pública, la implementación del rediseño de la gestión de casos y la transición de la base de datos de políticas y financiamiento de atención médica (HCPF).

Los capítulos de Arc y otras agencias de defensa importantes asociadas, como la Colorado Cross Disability Coalition, Family Voices y el Colorado Center on Law and Policy, comenzaron a reunirse en noviembre con HCPF. Las reuniones se iniciaron en respuesta a la transición de su sistema electrónico (base de datos) y a la preocupación crítica de que la información completa en relación con los niños y adultos con discapacidades no se transfiriera del antiguo sistema al nuevo.

Los capítulos de Arc y otras agencias de defensa comenzaron a recibir quejas en las que los niños y adultos que recibían LTSS recibían un aviso de que ya no eran elegibles para LTSS. Como resultado, Colorado reinició las redeterminaciones de elegibilidad de Medicaid para todos los inscritos en Medicaid, incluidos los niños y adultos que reciben Servicios y Apoyos a Largo Plazo (LTSS). Otros problemas abordados fueron la confusión en torno a la puesta en marcha de la fase I, el rediseño de la gestión de casos y el deseo de limitar cualquier interrupción para las personas que reciben el servicio en futuras fases de implantación.

Más recientemente, también abordamos el grave problema de que los proveedores no reciben el pago debido a la transición de la base de datos.

27 de febrero: El Centro de Leyes y Políticas de Colorado y las agencias de defensa se reunieron con HCPF para discutir sus inquietudes. El Centro de Derecho y Política de Colorado brindó a los defensores la oportunidad de discutir sus inquietudes; Los defensores pidieron que HCPF pusiera una pausa en la elegibilidad de Medicaid (por discapacidad), la implementación de la fase II del rediseño de la gestión de casos y que determinara por qué no se les paga a los proveedores y que corrigiera el CCMS.

28 de febrero de 2024 HCPF dijo:

El Departamento de Políticas y Financiamiento de la Atención Médica (HCPF, por sus siglas en inglés) recientemente se dio cuenta de un suceso no deseado que afectó específicamente a los miembros de LTSS como resultado de una actualización del sistema. El suceso dio lugar a que se programara la terminación de la cobertura de un subconjunto de miembros de LTSS a partir del 29 de febrero de 2024. HCPF está implementando una solución alternativa del sistema, que restablecerá y mantendrá cubiertas a las personas afectadas hasta que se encuentre una resolución adecuada para su caso. Emitiremos nuevas cartas de aviso de acción que indiquen una aprobación efectiva a partir del 1 de marzo de 2024 para todos los miembros que se vieron afectados.  Los mensajes electrónicos a los miembros afectados están programados para ser publicados el jueves 29 de febrero y las comunicaciones por correo de USPS están programadas para ser publicadas el viernes 1 de marzo.

Los capítulos de Arc continúan regresando a la mesa para resolver problemas con HCPF, pero estamos listos para escalar los problemas y mantenernos firmes abogando por que HCPF haga una pausa y haga las cosas bien para nuestras comunidades de personas con discapacidades. Además, nos hemos comunicado con la oficina del Gobernador para obtener una intervención adicional en caso de que sea necesario.

Si tiene preguntas o inquietudes, comuníquese con su capítulo local de Arc. Estamos listos para asegurarnos de que sus inquietudes sean escuchadas y para brindar defensa para y con usted siempre que podamos.

The post Advocacy in Action – Medicaid Terminations Must Stop! appeared first on AdvocacyDenver.

While preparing for the rollout of the Pediatric Health Assessment Tool (PAT) in August 2012, Health Care Policy and Financing (HCPF) staff predicted that “…this is going to be ugly.”

When HCPF launched their new Medicaid Management Information System “The Colorado interChange”, for claims payment on March 1, 2017, for months providers complained of reimbursement problems threatening their financial sustainability and services continuation. HCPF reported the system underwent several hours of testing. However, the testing apparently did not catch a list of issues.

In July 2023 as HCPF launched a new IT system and Phase I Case Management Agency (CMA) transitions, Disability rights agencies such as Colorado Cross Disability Coalition and The Arc chapters predicted “…this is going to be ugly.”

July 2023, HCPF launched the Care and Case Management System (CCMS) which is said to be designed to take over the Benefits Utilization System (BUS), the electronic system used by Single Entry Point agencies. All community centered board case managers were provided training in the new system. Boots on the ground staff entered information into the new system but continued to rely on the BUS that provided additional detail and historical information in relation to each client that is not captured in the CCMS.

October 31, 2023, HCPF denied Single Entry Point leadership and staff access to the BUS.

November 1, 2023, Phase I CMA Transition for Denver, Adams, Aurora, Arapahoe and Douglas counties. Rocky Mountain Human Services (RMHS) became the case management agency for Denver and Adams Counties; the community centered board for Adams, North Metro Community Services closed; and Developmental Pathways (DP) became the single entry point for Aurora, Arapahoe, and Douglas counties. Some 4,000 clients were moved from RMHS to DP; all clients with intellectual and developmental disabilities that were served by North Metro were moved to RMHS. HCPF refused RMHS and DP bid to notify their clients of pending changes in case management. A letter from Health First Colorado was sent late September/early October to each client stating that their case management agency was changing. By the way, HCPF admits that because of zip codes crossing county lines, the guardian or authorized representative address vs. client’s physical address, some members were inadvertently electronically transferred to the wrong CMA. Nevertheless, the letter included the name of the new agency and said:

Changes to agencies will happen between now and July 1, 2024. You can expect to receive a letter with more information from your new agency about 4-6 weeks before your agency changes. If you are interested in using a different agency for your case management than the one listed above, please reach out to your current case management agency or case manager.

Late notice did not allow the CMA to provide any written information to clients. Instead, Phase I CMAs scrambled to call as many clients as possible to explain changes. Speaking with AdvocacyDenver clients, most do not remember receiving a letter from Health First Colorado. Many do not recognize this as an agency who shares important information, instead, they pay attention to notices from RMHS, DP or North Metro. Finally, some clients are frustrated or confused with the procedures to opt for a different case management agency. November 21, 2023, HCPF said:

The CMA is responsible for informing the member of their CMA including contact information. Outgoing CMAs were required to mail members a notification of their CMA changing and the incoming CMA receiving the member was required to send a welcome letter to the member. Agencies are still sending welcome letters to members currently.

HCPF asserts that each CMA was responsible to provide the new CMA with a list of member information that included pending case management tasks, including any financial eligibility concerns.

. . . to assist CMAs, HCPF is pulling data reports to ensure members are coordinated with their CMA and the agency is aware of the members’ identified 100.2 end date, prior authorization for services and financial redetermination status.

AdvocacyDenver questions whether complete information is included in the Care and Case Management System (CCMS) or whether more complete information is found in the Benefits Utilization System (BUS).
In response to a long list of questions/concerns submitted by metro advocacy agencies HCPF said:

Clients who are concerned their services were terminated inappropriately can file an appeal with the Office of Administrative Court and can continue to receive services during the appeal.

This response is inappropriate. That is, if a client’s services were terminated because of faults in HCPF’s rollout of Phase I CMA, their IT system and/or because a CCB closed their doors and failed to notify a client, HCPF must make it right. HCPF assumes that clients are in a position to file/forward an appeal because of HCPF’s failure to provide appropriate safeguards when implementing a conflict free case management system. AdvocacyDenver challenges HCPF to identify resources/peoplepower to support said clients in any appeal proceedings from start to finish. AdvocacyDenver challenges HCPF to examine their IT system, and review and modify their procedures so that Phase II and III communities have a smooth transition.

The post “This is Going to be Ugly” appeared first on AdvocacyDenver.

The Moderna, a two-dose vaccine, will be offered on Friday, April 23 for the first dose and Friday, May 21st for the second dose, from 1 PM – 4 PM at 201 South Cherokee, Unit 100, Denver, CO 80223

Remember to wear a face mask when you come to the clinic. Individuals without a face covering will not be able to enter. We will have masks on-site if needed. Wear a loose-fitting, short sleeve shirt (sleeveless if possible) so the clinical staff can easily access your upper arm and shoulder. Plan to arrive 15 minutes before your appointment. There is a 15-minute observation time after receiving the vaccine for safety purposes, so please plan to be at the clinic for a total of approximately 30 minutes.

Click here for directions to the clinic site.

For Assistance Registering contact Melissa at (303) 974-2527

Be sure to sign up for BOTH doses!

The post COVID Vaccine Clinic April 23rd appeared first on AdvocacyDenver.

Nearly one year after COVID-19 changed our world and impacted lives globally, the release of two FDA-approved vaccines has offered hope to many. For Colorado’s intellectual and developmental disability community, the relief offered by the vaccine has become imperative to a population more impacted by social isolation, where the function of essential services and supports has changed, and many live with co-occurring or underlying conditions. In these interviews, AdvocacyDenver seeks to understand the development of Colorado’s vaccine priority schedule, along with the perspective of advocates and family members.

What kind of discussion is taking place in the statewide advocacy community around vaccine distribution?

There is ongoing discussion in terms of priorities and where individuals with intellectual and developmental disabilities, and the larger community of individuals with significant health impairments, fall in line as the vaccine is phased in. All of the Arc chapters have launched awareness campaigns. We want self-advocates, parents and providers to have information, in people-friendly terms, in order to make an informed decision in relation to the vaccine. Several of The Arc Chapters, Community Centered Boards, and other disability groups have volunteered with the state to help with vaccine distributions as resources become more plentiful. This collaboration may potentially help with targeted outreach and assist with getting “shots in arms” by trusted providers with whom people have relationships. Collectively, we are excited about the opportunity; however, timing still remains a question. The Governor’s Medical Advisory Committee, The Colorado National Guard, and the Department of Health Care Policy and Financing will continue dialogue as new information becomes available, as Center for Disease Control (“CDC”) guidance evolves, and as vaccines become more abundant. Together, we have been successful in prioritizing individuals that have difficulty wearing masks and adding Down Syndrome to the priority list.

What are the major areas of concern for advocates looking forward?

In many respects, the plane has taken off and we do not have a flight plan. The flight plan is dependent on so many factors. Vaccine availability is limited and variable week-to-week, the logistics of getting vaccines out given the ultra-cold temperatures required, different systems for signing up, the vast geography of the state, communication and transportation challenges in getting to vaccination sites. The world, and Colorado, has never deployed a vaccination distribution scheme on the scale and scope that we see today. A major challenge is that when the vaccine is offered, some individuals decline the resource. We are all looking forward to a world where the majority of our communities are vaccinated to achieve “herd immunity.” Although specific conditions are called out in the priority schedule, we look forward to a schedule that incorporates settings, the ability or lack of ability to social distance, and a more inclusive definition of Intellectual and Developmental Disability (“I/DD”).

Are there any recommendations being made by advocates in regards to the re-opening of in-person services and client safety?

As the pandemic stretches into the coming months, several changes have been made in the waiver programs to offer one-on-one services in lieu of congregate services. This is a protective factor for many people and the flexibility of providing services are an important change. Social isolation and the challenges associated with limited opportunities are top of mind for advocates statewide.

From the larger community, there seems to be a disconnect in understanding why those with intellectual and developmental disabilities should receive priority in the vaccine schedule. As a parent, can you speak to the importance of that priority for your son in particular?

I have a 17-year-old son; his name is Kennedy. Kennedy has Down syndrome and obstructive sleep apnea. It’s terrifying to think as a parent that he wouldn’t receive highest priority, to think of him in a hospital room with very poor outcomes at a potential greater than the average person in the population. There’s a university of Oxford study that looked at 8 million adults in England and identified that people like my son have four to five times the risk of very severe COVID versus the average person in that population, and also a 10 times greater risk of death. The way they’ve done the priorities they think they’ve captured my son and others, but they haven’t. If you look at “1B.3”, while Down syndrome is listed as a condition, in 1B.3 you have to have two conditions. Well, most people with Down syndrome don’t have cancer. They don’t have kidney disease. They don’t have sickle cell anemia. They don’t have organ transplants. Those are all pretty specific singular conditions, and most people with Down syndrome have a range of conditions that aren’t listed there- from obstructive sleep apnea to respiratory issues and compromised immune systems.

The other thing they try to point to is that people with disabilities have difficulty wearing masks. Well guess what? Most people with intellectual and development disabilities really don’t have difficulty wearing masks. My son doesn’t have difficulty wearing a mask. So as it turns out, Kennedy would be in Phase 2 after me. I’m a relatively healthy 65-year-old who plays tennis and walks, but my son, who’s a greater risk than me is prioritized after me. I would like to see is equity and parity for my son and others. There have been over one million people prioritized. Our population of adults (with intellectual and developmental disabilities) is maybe 10- to 20,000, so over a million have been prioritized, and somehow Kennedy is in Phase 2. Most people with intellectual and developmental disabilities, are in Phase 3. They’re in Phase 3 because they don’t have difficulty wearing masks, they don’t have Down syndrome, and they don’t have the very specific conditions listed in 1B.3 and 1B.2. So while the state thinks they’ve addressed this, they haven’t, and they put people like my son at risk.

How has Kennedy and your family’s life been affected by both the pandemic and its risks, as well as this delay in vaccination and getting back to the community?

Kennedy is extremely social. He’s a hugging machine for one thing, so the only people that he can hug now are people in the house. His ability to get together socially with his friends and schoolmates is drastically limited. If he were 18 his ability to be employed would be greatly impacted. The ability to go out and have birthday parties, go out to Chuck E Cheese and Red Robin, all of that’s been severely impacted. Those are things that are very meaningful in his life. Not the least of which is school, where his typical classmates are hybrid, so he doesn’t get to see them and he has difficulty with remote learning. He’s not contracted COVID, but he’s been in quarantine two or three times because others have.

As a parent, what action would you urge state officials to take in response to these concerns?

They have Down syndrome in 1B.3 and they have “PWD” (people with disabilities) who have difficulty with wearing masks. Just call it “PWD” or call it people with intellectual and developmental disabilities. What is the harm in going the extra distance? Spell out our population who is probably more severely impacted, or as severely impacted as anyone else, to resume more of a normal life. What’s the harm in doing that? It’s a small population. I don’t understand why this is such a struggle with HCPF, CDPHE, and the governor’s office. I don’t understand.

Colorado’s current vaccine distribution schedule is available here

Apart from the addition of Down syndrome to Phase 1B.3, what considerations are being discussed in Governor’s office in regards to the vaccine priority schedule and people with disabilities?

Josh Winkler: As you’ve already seen, things change. The original phasing came out in early January with very limited knowledge of what the Centers for Disease Control (“CDC”) was putting out and how many doses a state would be getting per week. There’s been a couple of revisions since, including about two weeks ago when Down syndrome was added. The 1B.1, 1B.2, and 1B.3 categories were all added, and those were largely based on CDC guidance, and revisions to that guidance, which included Down syndrome in particular as one of the conditions that data has shown has a correlation between mortality and that underlying condition.

All of those conditions [in those categories] are the same. Those are the conditions the CDC has found strong, scientific evidence that there’s a correlation. So at any given time the CDC could upgrade their recommendations. As we get changes on dosing, or another vaccine is approved- all those things could influence when there’s more revisions to the phasing. Nothing is set in stone. There’s a whole team of epidemiologists and doctors that are reviewing all of the information. We are trying to balance out the recommendations from the CDC and the numerous groups that are lobbying for why they think they should be moved higher in the priority, making sure that there’s a prioritization that preserves life and understanding how many doses we have coming into the state. Ideally we vaccinate everybody as quickly as possible, but we still only get about 100,000 doses a week at this point.

In terms of disability, how is that being defined? Is it like the Rehabilitation Act that defines a disability as a physical or mental impairment that significantly limits a major life activity?

Josh Winkler: Unlike a lot of other states, we haven’t gone with that broad of language. Again, it’s been that balance of going specific and calling out the specific things the CDC has identified as underlying conditions, and being broad enough that you’re not missing somebody who has some kind of rare disorder that’s very similar to, but not quite, the exact label. Rather than saying ‘intellectual and developmental disabilities’, for example- that’s not really what the evidence has shown there’s been the correlation of death with. It’s the underlying conditions that many people with I/DD might have. So if somebody has a heart condition and I/DD, they could be in that category because it’s the heart condition that puts them at a higher risk based on the CDC data.

Is there any current or projected data around COVID-19 incidence or cases in Colorado’s community of individuals with disabilities?

Bonnie Silva: We have two pieces of data around COVID that are specific to people with disabilities. Early on, Colorado realized that people with disabilities and older adults residing in congregate settings would be disproportionately impacted by this pandemic, so we immediately began tracking data specific to those settings to understand where the impact was the most significant and how to deploy our resources to mitigate the spread of COVID and to save lives. There’s also the data that HCPF has for people who reside in home- and community-based waivers, so not those in group congregate settings, but in community-based programs. So you would ask, ‘what does that data show us?’ Our data shows that people who reside in high-density group settings are at high risk for poor data outcomes from COVID. We also see that age in the disability population, similar to the non-disability population, is a high correlating factor for death.

First and foremost, hats off to the people of Colorado, because what our data shows is that people with disabilities who received services in Colorado are at a fairly low risk for mortality from COVID. That means they have done a good job with social distancing and adhering to the infection prevention guidelines that are out there. How this community has shown up and our data is not necessarily replicated in other states. I think it’s something that we, as a community, should be very proud of.

When looking at those group settings, by far people in nursing homes have been the most impacted, followed by people who reside in assisted living residences, then followed by group homes serving people with I/DD. More specifically, it’s 23% of the deaths have been from people in nursing homes, followed by 10.7% in assisted living, and 0.1% for the group homes serving people with I/DD. Of course all of those deaths are tragic, but we’ve worked hard to make sure that, on the prevention side, we take this holistic approach. We didn’t separate out a response for a nursing home from a response for people serving I/DD, we provided the same level of support across the board. Group homes are licensed to serve around eight to 10 people, whereas a nursing home might have 200 beds, so there’s a pretty big continuum when talking about group settings. We very intentionally included all of these early on in our holistic response and I think our data supports the outcomes for that.

In which of those three data sets would the state regional centers, for example Wheat Ridge Regional Center, fall?

Bonnie Silva: In the group home category, so that 0.1% group.
In terms of people in the community, the adult waivers serving people with I/DD had the lowest mortality rate when we’re looking at cross-disability population. That rate would increase when we look at, for example, the Elderly, Blind, and Disabled waiver, where we’re serving more older adults than we are in the I/DD waivers. If you’re looking for where the concentrated risk is, it’s the combined factors of disability, age, and setting that was the greatest risk for people.

Josh Winkler: One thing that surprised me on the data was that the general Medicaid population actually saw that deaths were at twice the rate of what they were in the waivers. So of the deaths in the general Medicaid population, twice as many were from COVID as the deaths in any of the waivers. Again, it goes to show how in-home care and people on Home and Community Based (“HCBS”) waivers in Colorado have done a great job of staying home, practicing social distancing, and wearing masks.

Looking at service providers and the future of service provision in the state, what expectations or recommendations are being made to service providers regarding the vaccine?

Bonnie Silva: Colorado made the decision, in terms of priority, to make sure that the direct support professionals providing care to people with disabilities were in that top-tier priority. If they provided care in group homes, they were in Phase 1A. If they provided in-home care to people on waivers, they were in that 1B.1 category. While there’s a lot of hope on the horizon in terms of vaccines finally being deployed, we need to have a good percentage of Colorado vaccinated in order to reach that “herd immunity.”

What we know is that the vaccine doesn’t necessarily stop the spread of COVID. It stops people from dying from COVID if they get it. I imagine for some time, at least at this juncture, that the infection prevention measures we have in place now will need to remain in place- the smaller group delivery of services, wearing masks, hand washing, social distancing- until we have a much larger percentage of the Colorado population vaccinated.

What discussion or planning is in place should a provider or a client refuse the vaccine? Is there an expectation from the state around disclosure from service providers in regards to whether they receive the vaccine or not?

Bonnie Silva: Vaccine confidence has been one of our key strategies that’ we’ve been working across trade provider organizations. We’ve hosted several Q&As to help people get trusted information in a way that helps them to make informed decisions. I know many of the trade organizations, in addition to the state efforts, are hosting their own campaigns to help the direct care providers, as well as members, understand the vaccine. There’s so much misinformation out there, so we’re working really hard to give people informed information to make solid decisions. That said, there’s no plans for us to require providers or members to take the vaccine or disclose whether or not they’ve taken the vaccine, at least not at this juncture. That might be something in the future to consider, but at this point we have seen that staff are pretty forthcoming about their willingness. We must continue to have those infection prevention plans in place because we don’t have vaccine acceptance across the board.

With the initial rollout of the vaccine in December, we had what I think we all found to be a fairly disheartening level of acceptance for the vaccine. Now here we are in February and it’s jumped leaps and bounds by 25-30%. We are hopeful that those acceptance rates will continue to jump up significantly in the coming months.

Josh Winkler: I would add that you don’t lose eligibility if you didn’t get it when you first became eligible. So whether that was residents or employees in a facility, they’re still eligible. When we move on to Phase 2 everybody in Phase 1A and the 1B categories will still be eligible. It’s a good thing but also adds to the need to err on the side of caution when we are figuring out the numbers on how far the doses will go and how long it’ll take to get through a phase.

Bonnie Silva: Our biggest constraint right now is the federal supply of the vaccine. We are ready! Give it to us, federal government, and we will deploy! We are all anxiously awaiting the day that any Coloradoan who wants a vaccine will be able to get one. Our biggest challenge right now is that we simply don’t have enough vaccine coming in.

Kaley Day is an Advocate for Adults with AdvocacyDenver.

She is a graduate of the University of Denver, majoring in Strategic Communication, and a sibling to a young man with disabilities. Kaley publishes Policy Perspective featuring interviews with state policymakers and community members on issues that affect the work and mission of AdvocacyDenver.

For questions or comments, contact Kaley at kday@advocacydenver.org

The post Priorities: The COVID-19 Vaccine appeared first on AdvocacyDenver.

How do I make a decision about whether or not to proceed with vaccination? 

Here’s a quick checklist of steps to take to support your decision making:

• Talk to your healthcare provider and any specialists to get their medical opinion on whether or not vaccination is right for you or someone you love
• If the vaccine is for someone other than yourself, as that person how they feel about being vaccinated and facilitate getting answers to their questions
• Understand and weigh the personal physical health risks of getting the vaccine (including allergies) vs. not getting the vaccine and possibly contracting COVID-19
• Understand and weigh the personal mental health risks of getting the vaccine vs. not getting the vaccine and possibly contracting COVID-19
• Consider a person’s ability to take effective, precautionary measures against COVID-19 (frequent hand washing, wearing a mask, social distancing, etc.)
• Learn about the possible side effects of the vaccine and how they can be treated

If you decide to get the vaccine:

• Ask your healthcare provider if they know when the vaccine will be available to you or your family member with a disability
• Learn where you can get the vaccine, and what it involves
• Check with your County Public Health Department for updates and sign up to be notified about vaccines if possible
  • Denver Department of Health: https://www.denvergov.org/Government/COVID-19-Information
  • Denver Health: https://www.denverpublichealth.org/
• Talk with your family and service providers to plan support for getting the vaccine (all required shots) and after care in the event you are not feeling well for a few days.  Your plan should include:
  • where to get the vaccine
  • how to get there
  • who will go with you as support
  • who will support you after you get the vaccine in case you have mild flu like symptoms
• Monitor for side effects. If you have symptoms after the vaccine call your doctor.  You can help others by reporting them to CDC Vaccine Adverse Event Reporting System (VAERS) https://vaers.hhs.gov/reportevent.html
• Ask your doctor what COVID-19 safety measures you will still need to take after getting your vaccine(s) and for how long

If you decide not to get vaccinated:

• Make sure you are still taking safety precautions against the transmission of COVID-19.  This is an excellent resource on what you can do to stay healthy: https://selfadvocacyinfo.org/wp-content/uploads/2020/03/Plain-Language-Information-on-Coronavirus.pdf
  • Wash your hands frequently
  • Keep at least 6 feet from others
  • Avoid touching your face
  • Cover your nose and mouth when you cough, even if you are in your own home
• Know that you can change your mind and decide to get vaccinated at a later date.  If you do make that decision, contact your health care provider to find out how you should proceed.

Remember, the choice of whether or not to vaccinate belongs to you.  Ask questions, learn, and then make the best informed decision you can!

The post Decision Making Regarding the COVID-19 Vaccine appeared first on AdvocacyDenver.

If you are currently working with an advocate, rest assured that they will still be able to continue to provide advocacy services. If you are in need of advocacy services and are not currently working with an advocate, please fill out our on-line advocacy form at: https://www.advocacydenver.org/our-programs/make-a-referral/

We have several events scheduled that we will approach on a case-by-case basis. We continue to provide and record webinars that are available at: https://www.advocacydenver.org/category/webinar

We have below some additional information and resources for families. Please note this is a rapidly changing situation. You can check back to find updates. Please note the list below is for informational purposes only as AdvocacyDenver does not endorse any of the following companies or services:

COVID-19 Information By and For People with Disabilities: Table of Contents

• Educational Rights of Children with Disabilities During the Pandemic
• Decision Making Regarding the COVID-19 Vaccine
• Information about Schools and Day Programs
• Statewide Information and Resources
• Denver County-Specific Information and Resources
• Using Zoom for Video Conferencing

Educational Rights of Children with Disabilities During the Pandemic

This handbook was developed by the Colorado chapters of The Arc (AdvocacyDenver is the Denver chapter), Disability Law Colorado and the Native American Disability Law Center. It provides general information and steps you can take to preserve your child’s rights regardless of where they are being educated. In addition, it includes checklists, sample letters as tools when you work with your child’s school or district.

Download the Educational Rights of Children with Disabilities During the Pandemic Handbook in English
Descarga el manual “Derechos Educativos de Los Niños con Discapacidad Durante La Pandemia” en Español

Colorado Crisis Standards of Care

Treatment of COVID-19 has been a challenge for Colorado’s health care system. Fortunately, there are currently no state-wide shortages of medical care, equipment, or facilities in Colorado and everyone who needs medical care can get it.

In the event that there was a shortage, the state of Colorado has created a plan for who gets medical care first. This plan is called the Crisis Standards of Care, and will only take place if many people become sick and need to go to the hospital and if there is not enough medicine for everyone. So far this has not happened and current trends do not suggest that it will happen. However, it is still a good idea to be informed about the Crisis Standards of Care and how it might affect you.

Read the guide to the Colorado Crisis Standards of Care in English

Lea la guía de los Estándares de atención de crisis de Colorado en español

Useful Tips for First Responders Aiding with People with Disabilities During COVID-19

Many of us, including people with intellectual and developmental disabilities (I/DD) are feeling anxiety in this time. For people with disabilities, this anxiety is heightened by underlying health conditions that might make them more vulnerable to the spread of COVID-19 and due to the widespread media coverage over the possible rationing of medical care to persons with disabilities.

For some with I/DD, interaction with authority figures can provide an added level of stress, even under normal circumstances. This guide is meant to provide some basic help for assisting persons with I/DD during this time.

Read COVID Tips for First Responders in English

Lea Consejos útiles para los socorristas que ayudan a las personas con discapacidad durante COVID-19 en español

Decision Making Regarding the COVID-19 Vaccine

This page has a section of links to information about the vaccine itself which can be easily accessed by clicking on the hyperlinks in this article. Though AdvocacyDenver cannot provide you with a definitive answer to the question, we can provide you with the tools you need to make the best decision possible for yourself or the person in your life with a disability. Read More…

Information about Schools and Day Programs

Denver Public Schools Listening Session for Parents of Children with Disabilities

The Denver Public Schools held a Listening Session for parents of children with disabilities on Wednesday August 12 at 5 p.m. The listening session offered District leaders an opportunity to outline plans, but more importantly providid parents an opportunity to ask questions and for District leadership to respond. View a recording of the listening session here.

Should my Child or Client Return to School or their Day Program?

Even though some schools and day programs are re-opening, parents and care givers may not be sure whether their children or clients should return. AdvocacyDenver has put together some checklists to help parents and care givers make that decision.

The following checklist serves as a tool when considering whether or not your child should return to in-school program or continue to participate in remote learning:

• COVID 19 – School Program Checklist (English)
• COVID 19 – School Program Checklist (Spanish)

The following checklists serve as tools when considering whether your adult child or client should transition back to Day program and/or other options for providing meaningful daytime activities:

• Day Program Re-Entry Checklist
• Considerations for Day-Program Return
• The Arc in Colorado’s Person Centered Plan for Re-Entry Into Day Programs

Statewide Information and Resources

Colorado Department of Public Health and Environment: https://covid19.colorado.gov/

Colorado Department of Labor discusses the options if your employer is closing or your work hours are reduced: https://www.colorado.gov/pacific/cdle/information-and-resources-coronavirus

The Department of Health Care, Policy, and Financing (HCPF) about COVID-19, including guidance for Host Home Providers, Day Programs, etc. https://covid19.colorado.gov/

Housing and Shelter resources: https://www.211colorado.org/housing-and-shelter/

Social Security Administration https://www.ssa.gov/coronavirus/

Xcel Energy: https://www.xcelenergy.com/covid-19_response

Denver County-Specific Information and Resources

Denver Public Health COVID-19 Information and Case Data: http://www.denverpublichealth.org/clinics-services/infectious-disease-clinic/coronavirus-disease-2019

Updates from the Denver Public Schools including options to obtain food: https://www.dpsk12.org/coronavirus/#familyresources

Rocky Mountain Human Services Mill Levy – provides gap funding for individuals with intellectual and developmental disabilities birth through life: https://www.rmhumanservices.org/ml

Denver Human Services: https://www.denvergov.org/humanservices

Denver Parks and Recreation @ Home provides free online programming with diverse options for all ages and abilities to enjoy. https://myemail.constantcontact.com/Denver-Parks-and-Recreation-at-Home.html?soid=1101784674537&aid=lndXwDPGwXU

Using Zoom for Video Conferences

Join a Zoom Meeting from Email: https://drive.google.com/file/d/1uZUpMsuDu9EH-aQFvpmu15OwXAdDDOeG/view?usp=sharing

Set Up Sound and Video in Zoom Meeting: https://drive.google.com/file/d/1DNlXbXJ3ZTv4_WBII3syizqhyH4_lUZG/view?usp=sharing

Zoom Meeting Controls: https://drive.google.com/file/d/1B3ItsW4nqMpKjBG1-826Lo6Up_dHV6cE/view?usp=sharing

Video Meeting Social Rules: https://drive.google.com/file/d/127_ON4-cgvPGe8x0x-d7pGhpPY4NkpAr/view?usp=sharing

The post Latest COVID-19 Information by and for People with Disabilities appeared first on AdvocacyDenver.

These meetings will be designed to garner feedback from the community on how these changes would impact them and will inform the Department’s implementation decisions. Each meeting will include a short presentation about current waiting list and enrollment practices and potential changes, and then time for open discussion, questions and comments.

DD Waiver Waiting List Stakeholders WEBINAR/CALL-IN Meetings

Dates and Times:

Tuesday, February 18, 2020
9 a.m. – 11 a.m. MST

Tuesday, February 18, 2020
5:30 p.m. – 7:30 p.m. MST

Wednesday, February 19, 2020
11:30 a.m. – 1:30 p.m. MST

Call-in Information for all three meetings:

Local: 720-279-0026
Toll Free: 1-877-820-7831
Participant Code: 982280#

Webinar Link for all three meetings

DD Waiver Waiting List Stakeholders IN-PERSON ONLY Meeting

Date and Time:

Wednesday, February 19, 2020
2:30 p.m. – 4:30 p.m. MST

Where:
Community First Foundation
(free parking, accessible parking and facility)  
5855 Wadsworth Bypass, Arvada CO 80003
Unit A, Changemaker Room

The post Home and Community Based Services – Developmental Disabilities (HCBS-DD) Waiver – Waiting List Stakeholder Engagement Announcement appeared first on AdvocacyDenver.

The national Arc is fighting a 2018 ruling in a Texas U.S. District Court that determined the Affordable Care Act (ACA) unconstitutional.  That case is now pending in the U.S. Court of Appeals for the Fifth Circuit. The Arc has joined 14 other national organizations representing people with disabilities in filing an amicus brief appealing to reverse the lower court’s decision.

The Chief Executive Officer of the Arc of the United States, Peter Berns, has called the lower court’s decision “an extraordinary threat” for people with disabilities and their families.  He says if the ACA is taken off the books, it will set the advocacy efforts for individuals with intellectual or developmental disabilities (IDD) back 70 years.

What was the reason for the Arc joining in the filing of the amicus brief? 

The Arc has gotten involved in this case because of the importance of that law to our constituents.  This case threatens the very existence of the Affordable Care Act.  The ACA is perhaps the most important positive development in the law that benefits people with intellectual or developmental disabilities in the past 25 years or more.  There are a variety of reasons why the ACA is so important.  First of all, it makes health care much more widely available to people with disabilities.  It prevents insurers from limiting coverage based on preexisting conditions.  It also prevents insurers from imposing annual or lifetime caps.  It also has a variety of other provisions in it that are important for people with disabilities.

What do you see as the purpose of the brief?

The purpose of the amicus brief was to highlight for the court the importance of the law to people with disabilities, particularly to those with IDD.  The courts may generally understand what would be at stake with doing away with the ACA as it relates to the general population.  That is folks who are getting health care through the Act or who are benefitting from the Medicaid expansion.  What we sought to do in the brief is to shine a light specifically on the importance of the law to people with disabilities and the issues they face.  This includes: preexisting conditions; lifetime and annual caps; and the fact that the Medicaid program (which was expanded under the ACA) is the single most important and largest source of funding for home and community-based services for people with disabilities.  The lawsuit is part of a consistent effort by some states and the current administration to undo the ACA.  The current administration, in deciding not to defend the ACA, is risking wreaking havoc on the lives of people with IDD and their families.

On what basis did the lower court find the ACA unconstitutional?

The suit was brought by state attorney generals representing 20 states that did not want to expand Medicaid.  Congress had authority to enact the ACA under the Commerce Clause of the Constitution and under its taxing powers.  When an earlier court decided that a tax could not be assessed for the mandate to buy coverage, opponents of the law argued that Congress didn’t have authority to enact this law under its general authority to regulate commerce in the U.S.  The District Court bought that argument.  It found that, once the mandate was thrown out, Congress no longer had authority to enact the law under the Commerce Clause.  That’s the issue that is now pending in the Fifth Circuit Court of Appeals.  It’s the question of, “If one provision of the law has been invalidated, does that mean the whole thing has to be thrown out as unconstitutional?”  This is most likely going to go all the way up to the U.S. Supreme Court.  

What proactive steps can state and local chapters take to protect health insurance for people with disabilities?

One of the most important things that chapters of the Arc can do is to make sure that all of your constituents are educated about these issues, to have them speak out to their members of Congress about their concerns of being excluded by preexisting conditions, of continuing to be eligible for Medicaid.  They can tell their personal stories about the importance of the availability of health insurance to them.  This lawsuit is an extraordinary threat.  The powers that be are continuing to attack the ACA, chipping away at the ACA in a variety of different ways.  They are trying to inflict a death by a thousand cuts. We need our representatives in Congress to understand that, for people with disabilities and their families, this is a matter of life and death.  This is a matter that impacts whether people can be included in their communities and live a decent life like everybody else.  We need to continue to be vocal on these issues indefinitely into the future.  If we lose the ACA, it’s a giant step backwards.

Catherine Strode is Advocacy Denver’s Communications and Policy Specialist.  She holds a Masters degree in Public Administration with an emphasis in Health Care Policy. Catherine publishes Policy Perspective, featuring interviews with state policy makers on issues that affect the work and mission of Advocacy Denver.

The post National Arc Fights Court Decision to Invalidate the ACA appeared first on AdvocacyDenver.

From The Desk of Pamela Bisceglia

At different times, over the years, I had an opportunity to stand with Carrie Ann Lucas on issues important to the community of individuals with disabilities.  I cannot report that we were Facebook friends, we did not meet for lunch or dinner or discuss our personal lives.  I knew Carrie as a bright, firm, determined parent, attorney, advocate, and community leader.  If there was a question in relation to the rights of parents with disabilities, Carrie was the expert. 

On February 24, 2019, Colorado Cross Disability Coalition issued the following statement:

The disability community lost one of its fiercest advocates on 2/24/19.  Carrie Ann Lucas, a disability rights attorney who pioneered representation for parents with disabilities, died after an arbitrary denial from an insurance company caused a plethora of healthproblems, exacerbating her disabilities and eventually leading to her premature death. She was 47 years old.
 
Carrie Ann had hoped to spend a lot of time in 2019 using her tragedy to work to fix our broken health care system.

On October 20, 2016, the headline for AdvocacyDenver’s Policy Perspective was:  Advocate Urges “NO” Vote on “End of Life” Proposition:

Carrie Ann Lucas, an attorney and self-advocate, has over 20 years of expertise working for disability rights organizations.  She is also on the [B]oard of Not Dead Yet, a national grassroots disability organization.  Ms. Lucas is strongly opposed to Colorado’s Proposition 106. In an interview with Catherine Strode, she calls Proposition 106 “dangerous policy” and discusses the lack of safeguards for Colorado’s most vulnerable populations. 

I reread this 2016 interview and it struck me that some of the narrative holds true when speaking about our health and insurance systems.  Carrie said:

I think it should have to be someone’s primary care physician with whom someone has been in a doctor/ patient relationship for some time . . . . Anyone who has been in a hospital knows that whatever doctor comes into your room for five minutes at the beginning of the shift, that’s your “attending physician.”  It doesn’t mean they know anything about you.

I am a quadriplegic myself.  I am also the parent of four children with disabilities.  Those of us who are disabled, and have family members who are disabled, see how our lives are devalued by the medical system.

As noted on Carrie’s Facebook page, “on February 24, 2019 [she] died after an arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities and eventually leading to her premature death.”  I am appalled that any insurance company is able to trump a physician’s order.  I am outraged that public and private insurance companies have the authority to determine what, if any medical procedure or measure will be taken, prescriptions they will or will not fund, or rehabilitation services they will receive. 

The post Last Interview appeared first on AdvocacyDenver.

The Arc of the United States is actively opposing the nomination of Judge Brett Kavanaugh to the Supreme Court. It is rare for the national Arc to oppose judicial nominations. The last time the United States Arc opposed a judicial nomination was more than 30 years ago.

Its Chief Executive Officer, Peter Berns, says Judge Kavanaugh represents values and a philosophy that are regressive for individuals with developmental or intellectual disabilities. He is urging Arc chapters across the country to speak out against the Kavanaugh nomination to their U.S. Senators, asking them for a “NO” vote on his Supreme Court nomination.

In this interview with Catherine Strode, Peter Berns cites specific decisions written by Judge Kavanaugh that are found to be offensive by the national Arc. Berns says these decisions in the areas of health care, education, and employment threaten the independence and well-being of individuals with intellectual or developmental disabilities.

Why is Judge Kavanaugh’s record opposed by The Arc of the United States?

We have reviewed Judge Kavanaugh’s decisions where he has expressed positions that are contrary to people with intellectual or developmental disabilities and their families.

One of the primary examples is a case that speaks to his views about self-determination. It was a class action lawsuit brought by three women who were institutionalized. These three women were subjected to non-emergency surgical procedures without having any input into the decision. They were determined not to be competent to make decisions about their own health care. The U.S. District Court held that the District of Columbia had to consider their wishes as expressed through people who knew them as to whether they should have these elective medical procedures. The U.S. Circuit Court of Appeals reversed that decision, in a decision written by Judge Kavanaugh. He concluded these individuals should have these procedures without even being asked about their wishes. That is one case that has caused us a great deal of concern about his judicial philosophy. It’s not the only decision, but it was one we found greatly persuasive in our review of his record.

Have his decisions in education been negative to our community?

Yes. He authored an opinion that reversed a District Court Order, which required the government to provide compensatory services to a student who had been incarcerated in a Maryland prison. The lower court had found in favor of the student. But Judge Kavaunaugh in the Court of Appeals reversed the decision. He applied contract law, reaching the conclusion that the District of Columbia was relieved of its obligation because it was not practical for the provider to enter the facility.

As an attorney in private practice before he came on the bench, he represented Florida Governor Jeb Bush in creating the Opportunities Scholarship Program. It was a student voucher program allowing students to take public school funds to use for private schools or religious schools; the private schools were not required to provide the IDEA (Individuals with Disabilities Education Act) services. Judge Kavanaugh was part of the legal team that supported the creation of this program. That program was later struck down by the Florida Supreme Court as a violation of the state’s constitution. There are actions he has taken both on and off the bench having to do with education that have caused us concern.

Which of his decisions in health care and employment do you take issue with?

In the health care arena, the biggest concerns we have about Judge Kavanaugh’s record are positions he’s taken about the Affordable Care Act. The Affordable Care Act is one of the most important developments in the law for people with disabilities since the enactment of the American Disabilities Act. It’s important in guaranteeing people with preexisting conditions cannot be denied insurance coverage. There are also provisions in the Act that are extremely important for people with disabilities. Judge Kavanaugh, on three different occasions, has taken positions contrary to the Affordable Care Act. In one case, he was questioning the magnitude of it and whether it was in the scope of authority of Congress to enact. That position is of great concern. Should he get on the Supreme Court, there is risk they would not uphold its constitutionality. In relation to employment, there have been at least five cases that he was involved in that had to do with disability discrimination. Each had different legal issues, facts, and circumstances involved. But in all five cases, he sided with the employer as opposed to the employee who was citing discrimination.

How do you sum up the impact his appointment would have on people with intellectual or developmental disabilities?

The Arc does not often take a position on judicial appointments. We did not take a position on the appointment of Judge Gorsuch. We try to confine our analysis to only what is going to impact individuals with intellectual or developmental disabilities, their families, and organizations that serve people with IDD. While we are aware of considerations about civil rights, we try to be laser-like in our focus. We concluded there is good reason to be concerned that if he were to become a justice of the Supreme Court, his judicial philosophy runs counter to many of the values we hold important as the Arc. There is a sense of disregard in his judicial philosophy of the lives of people with intellectual or developmental disabilities, a disregard for their basic human rights, their dignity, their existence as individuals.

AdvocacyDenver urges our membership to contact Colorado Senators to state your concerns/opposition to Kavanaugh’s nomination and possible appointment to the Supreme Court:

Michael Bennet
https://www.bennet.senate.gov/?p=contact
Phone: 303-455-7600
Fax: 202-228-5097

Cory Gardner
https://www.gardner.senate.gov/contact-cory/email-cory
Phone: 303-391-5777
Fax: 202-228-7171

Catherine Strode is Advocacy Denver’s Communications and Policy Specialist.  She holds a Masters degree in Public Administration with an emphasis in Health Care Policy. Catherine publishes Policy Perspective, featuring interviews with state policy makers on issues that affect the work and mission of Advocacy Denver.

The post The Arc of the United States Opposes Supreme Court Nominee Brett Kavanaugh appeared first on AdvocacyDenver.