“Passport” for individuals with developmental disabilities and families to use when seeking treatment for COVID19 symptoms.
The Ohio Association of County Boards of Developmental Disabilities created the attached form for individuals and families to use when seeking treatment for COVID19 symptoms. People can use this form to assist health care professionals with the care and treatment of patients with intellectual and developmental disabilities in these extreme circumstances.
Download the form as a .pdf file, click here or on the above graphic. OACB_ RCNP_Health_Passport_Hospital_Transfer_Form_PDF
Also included here is recommended language provided as guidance from HHS that rationing or denying accommodations during COVID19 treatment is a violation of civil rights. You can click here to print out legal guidance and give it to the hospital along with the “passport” form. Or add a page to the “passport” form that says something along the lines of:
This information is not a waiver of any civil rights for this patient under federal and state law including but not limited to the Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which prohibit discrimination on the basis of disability in health programs or activities. For more information see “Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19)” from U.S. Department of Health and Human Services at https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf and “Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing” at https://www.centerforpublicrep.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf.”
by Andrew Pulrang
“Nomination for most repeated sentence in an article on disability culture this year:
“‘You need to see Crip Camp!’
“I put off watching the new Netflix documentary, Crip Camp: A Disability Revolution. As a disability rights colleague commented on my Facebook page, ‘Sometimes, when a film is loudly touted as “it’s about disability and you should see it,” it feels like homework.’ I heard nothing but excitement about the film for months leading up to its release, and almost universal praise once it came out. Still, I hesitated.
“I knew a lot about Crip Camp before it even came out. I have been disabled all of my life, and I have been involved in the disability culture and activism for all of my adult life. And Crip Camp has been talked about in the disability community for months.
“Crip Camp follows a group of disabled youth … ”
Read this artice in its entirety at Forbes magazine, click here.
Ed Roberts | “How a student with his 800-pound iron lung pioneered disability rights, changed U.S. law” – The Washington Post
“Today, ventilators help pump air into the lungs of patients with the novel coronavirus and other illnesses who cannot get enough oxygen on their own. Modern units are relatively compact. But in the past, massive iron lungs were the only option for people with polio and other illnesses — and a tussle over one person’s iron lung would help pave the way for the Americans With Disabilities Act, ADA.
“Paralyzed from the neck down, Ed Roberts needed an iron lung to help him breathe. But when officials at the University of California at Berkeley learned he planned to bring his 800-pound breathing device with him to college in 1962, they tried to revoke his acceptance.
“Roberts had already faced down discrimination over his disability:” Continue reading.
Litsa Dremousis | “Yes, I’m disabled. But I still love sex.”
“If I had known I’d get hit with a disabling neuroimmune illness when I was 24, I wouldn’t have waited until I was 20 to lose my virginity. I would have gotten an earlier start, making the most of my body while it fully cooperated.
“When I was able-bodied, guys asked such as questions ‘Have I seen you before in a dream?’ or ‘What did Botticelli do after he painted you?’ Cheesy questions, no doubt, but imbued with the assumption I’m a sexual being. After I became disabled, they tacked on still dumber questions, such as ‘Are you contagious?’ Or even ‘Can you have sex?’ (More than once, I’ve answered, ‘Yes, but not with you.’)
“Sex is a potential minefield for all of us, but for years, I’ve had to dodge the shrapnel on crutches. Continue reading.
“During the coronavirus challenge, it’s important for populations at higher risk – older people especially those with underlying health issues – to practice ‘social distancing’ – but a scaled down social life doesn’t have to be a lonely one. Using the Internet can connect us with the people we care about and can bring us in touch with a wider world – both of which make us feel less isolated and lonely.
Recent statistics show that seniors are rapidly entering the social networks arena. Sign up for a network, connect with friends (you might even discover some old friends) and enjoy the results.
Click here to read this article in its entirety at Senior Planet.
“For patients and workers alike, home health visits fraught with fears of coronavirus” – The Boston Globe
“JOHN TLUMACKI/GLOBE STAFF
“Eric McGuire relies on home healthcare workers for almost everything: helping him get from his bed to a wheelchair, assisting with bathing and dressing, checking his oxygen levels while he sleeps.
“On Monday, one his caregivers told him she thought she had a sinus infection, but had arranged to be tested for the novel coronavirus just to be sure and was self-quarantining as a precaution. She asked whether he was showing any symptoms.
“McGuire, 43, felt fine, but is worried about whether she could have passed something along to him during a visit to his Franklin home. And as he battles to regain the use of his legs after a nerve disorder nearly killed him two years ago, he worries how he would get by if his aides stop coming by.”
Maria Fabrizio for NPR
by Elissa Nadworny
“With school closed, Marla Murasko begins her morning getting her 14-year-old son, Jacob, dressed and ready for the day. They have a daily check-in: How are you doing? How are you feeling? Next, they consult the colorful, hourly schedule she has pinned on the fridge.
“Jacob, who has Down syndrome, loves routine. So this daily routine is important. Schools in Hopkinton, Mass., are closed until April 6th, so Jacob’s morning academic lesson — which according to the schedule starts at 9 a.m. — has been temporarily moved to the basement.
“But there’s been one big hiccup to all this: What, exactly, to learn during these at-home sessions?”
With older Americans at higher risk for social isolation, science may have a treatment
ILLUSTRATIONS BY MAKOTO FUNATSU
by Lynn Darling
“Genomics Researcher Steve Cole had never really thought much about loneliness and the pain it causes until he looked into a molecular microscope at a small sample of white blood cells. What he saw there changed his life.
“The sample was one of several that had been taken from a handful of very lonely men and women, and Cole’s observations were startling: In each of the samples, the blood cells appeared to be in a state of high alert, responding the way they would to a bacterial infection. It was as though the subjects were under mortal assault by a disease — the disease of loneliness.
“But even more surprising to Cole, a professor of medicine, psychiatry and biobehavioral sciences at the UCLA School of Medicine, was the public reaction to the subsequent study he coauthored, when it was published in 2007.
“‘The impact at the societal level — it really kind of shocked me,’ he says.”
On Tuesday, March 10, the U.S. House of Representatives passed the Supporting Older Americans Act of 2020, which reauthorizes the Older Americans Act for an additional five years (through 2024). The bill was previously passed by the Senate and now heads to the President for his signature.
The aim of Aging and Disability Resource Centers (ADRCs) is to create “one-stop shop” single entry points for information about the range of public and private long-term services and supports (LTSS) available to consumers. ADRCs may provide options counseling regarding public and private LTSS, and provide access to public programs such as Medicaid and Department of Veterans Affairs programs.
ADRCs may also provide discharge planning and care transition services to help individuals remain in their own homes after a hospitalization, rehabilitation, or
skilled nursing facility visit. There are over 500 ADRC sites nationwide, operating in 50 states, two territories, and the District of Columbia.
The Pennsylvania Link to Aging and Disability Resources is an Aging and Disability Resource Center.