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.

Investigative Report on Immigration Detention Released Today, Sept. 18, 2019

CCDC wants to thank the ACLU of Colorado for your groundbreaking (and heart breaking) expose.   We are proud to partner with this great organization and with CREEC who is also doing this work and look forward to working with anyone interested to assure that immigrants and asylum seekers with disabilities are treated fairly and humanely.

———- Forwarded message ———
From: Rachel Pryor-Lease <rpryor-lease@aclu-co.org>
Date: Wed, Sep 18, 2019 at 10:52 AM
Subject: Investigative report on immigration detention released today
To: Julie Reiskin <jreiskin@ccdconline.org>

Today marks the release of our investigative report about the GEO immigration detention facility in Aurora: Cashing in on Cruelty: Stories of Death, Abuse and Neglect at the GEO Immigration Detention Facility in Aurora.

The report is based on a nine-month ACLU of Colorado investigation, which included a lawsuit against ICE under the Freedom of Information Act (FOIA) for records about Mr. Samimi’s death and interviews with dozens of victims of mistreatment. The investigation revealed numerous stories of medical incompetence, dental neglect, inadequate mental healthcare, lack of accommodations for detainees with disabilities, as well as substandard care that contributed to the suffering and death of Kamyar Samimi, a Lawful Permanent Resident for more than 40 years.

Cashing in on Cruelty provides a set of recommendations to improve state and local policy, including increased oversight and accountability of ACDF, divesting from investments in private detention operators like GEO, funding for legal counsel and bond money for detainees and limiting local cooperation with ICE. The policy brief enumerates ways that Colorado cities, counties and the state should respond to the expansion of private immigration detention centers to improve conditions of confinement and reduce the number of people who end up separated from their families and communities or worse — dead.

Read the report and learn more, including actions to take and know your rights information at: https://www.allarewelcomeco.org/.

As a reminder, we are having an informal breakfast this Friday, September 20^th from 8:30-10am to hear from the staff that worked on the report, as well as learn more about our next steps. Please let me know if you would like to join us.

Thank you for your support, so that we can continue to do this critical work.

Best,

Rachel

Rachel Pryor-Lease

(Pronouns: she/her/hers)

Director of Philanthropy

American Civil Liberties Union of Colorado

303 E. 17^th Ave., Suite 350

Denver, CO  80203-1256

(720) 402-3105

rpryor-lease@aclu-co.org

Because Freedom Can’t Protect Itself

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Sign up for e-alerts and support our work at www.aclu-co.org

P.S. Please join us at our annual Bill of Rights Dinner on Thursday, September 26^th at the Ritz-Carlton Hotel Denver. For tickets and more information, visit: https://aclu-co.org/events/bill-of-rights-dinner/.

Motivational Speaker, Performer, Music Teacher

by Gail Hamilton

 Title of your position:

 Motivational Speaker, Performer, and Music teacher

Is this a current position or a position you held in the past?

 Current

Brief description of your duties:

I write and edit materials, emails and social media, phone calls, manage one-person staff, prepare and polish presentations, support all types of people with various mental, emotional, age, and physical disabilities.

Required experience/ education/ skills needed  for your position:

• Expert in my field-MA in Psychology and counseling and MM in vocal performance

• Published my memoir “Soaring into Greatness, a Blind Woman’s Vision to Live her Dreams and Fly”

• Member National Speakers Association; and National Speakers Association of Colorado-NSA Colorado

• Graduate of Colorado Speakers Academy

• Previous engagements in Colorado, Florida, Indiana, North Dakota, and California.

• Fourth Runner up in the National Ms Senior America Pageant

• Almost forty years teaching individual and group piano lessons to children, adults, and seniors

Accommodations/modifications which allow you to perform your job/position

Computer with screen reader/JAWS

AIRA; sighted assistance on demand – assist on and off stage, traveling, office work and more.

Professional assistant

iPhone

Braille computer

Seeing Eye dog and/or white cane

How many hours a week do you work?

Outside the office, minimum 2/two; maximum 10/ten; however, this does not count the forty hours plus at home working.

What is a challenging aspect of your position and how do you work around it?

Obtaining sighted assistance for computer, websites, research, filling out contracts and promotional materials.

I’m getting around this by recently hiring an assistant and begun to use AIRA; however, I still need to acquire more visual help at a lower cost.

What is an enjoyable aspect of your position?

 Enjoyable aspect is touching and changing lives. Giving people the motivation to overcome and change any situation they find themselves facing. Giving others hope and knowledge they aren’t alone. And, inspiring them through my singing voice.

Anything else you want people to know about your position.

People who are blind face 90% unemployment rates still in 2019. Because of this, we sometimes are not seen as capable or valuable in the workplace. Most times, we are loyal, committed, and hard working. Accommodations allow us work and participate. We want to be seen as capable and work to be viable.

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.