March 2021

WP_Post Object ( [ID] => 28881 [post_author] => 572 [post_date] => 2021-04-01 00:00:00 [post_date_gmt] => 2021-04-01 05:00:00 [post_content] =>

[post_title] => Access Press - April 2021 Edition [post_excerpt] => [post_status] => publish [comment_status] => closed [ping_status] => closed [post_password] => [post_name] => access-press-april-2021-edition [to_ping] => [pinged] => [post_modified] => 2021-04-01 09:33:25 [post_modified_gmt] => 2021-04-01 14:33:25 [post_content_filtered] => [post_parent] => 0 [guid] => https://accesspress.org/?p=28881 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw )

Minnesotans with Down syndrome question vaccine priority ranking

By Jane McClure

Minnesotans with disabilities continue to be among those scrambling to get COVID-19 vaccinations scheduled. People with Down syndrome and their families are especially worried. They are raising awareness of the need to move up on vaccination priority lists.

People with all kinds of disabilities are seeking help getting vaccines scheduled, due to compromised immune systems and other health issues. While group home and nursing home residents are among the highest priority populations, those who live in the community are not. And that is what raises red flags.

For people with intellectual and developmental disabilities, contracting COVID-19 poses serious if not fatal risks. Not only are community members immunocompromised and have preexisting conditions, many are also dealing with the lack of care the entire Minnesota disability community faces. Questions have also been raised about the ability of people with such disabilities to remember to wear masks and properly social distance.

Statewide and nationally, there is no reliable tracking of the number of COVID-19 deaths among those who have Down syndrome or other intellectual and developmental disabilities.

A vaccination

The Down Syndrome Association of Minnesota (DSAMN) is leading the charge for its constituents, starting a Change.org petition to draw attention to the issue and urging everyone to call elected officials. As of Access Press deadline, 9,656 people had signed the petition.

Sarah Curfman, executive director of DSAMN, said that awareness of where people with Down Syndrome stood in the state’s vaccination line came during a mid-January announcement on priority. “We said, holey moley, we are behind 2.4 million people.”

State officials contend they are doing all they can to get supplies of the vaccines and to work through the priority schedule of when certain groups are to be vaccinated. The priority is currently for more than 1.5 million senior citizens, health care workers, educators and long-term care facility residents. The state was nearing one million vaccinations as February came to an end.

Minnesota has exceeded 6,400 deaths and was closing in on 25,300 hospitalizations of Minnesotans. Almost 90 percent of deaths have been to persons age 65 and older.

Curfman recently posted an update on the petition drive. She called the response from Gov. Tim Walz’s office “lacking.” She has also expressed frustration with conflicting information from the state and the federal Centers for Disease Control and Prevention (CDC) and the fact that the state has removed some pandemic information from its website..

“There wasn’t much substance to the response other than to say, many groups need vaccination, we do not have enough supply, and that they are ‘largely following CDC guidelines’ as to who gets vaccinated first,” she said.

Young adults who have jobs or school, and want to be out in the community are struggling, said Curfman.

Suzy Lindeberg of Stillwater told the Associated Press that her hockey-obsessed son John Lindeberg, 20, managed the high school team before the pandemic, but even as the teens get back on the ice his Down syndrome means he has to stay home.

“He watches his brother leave for his high school hockey practices, and that’s hard because and he really wants to be at the hockey rink,” she said. “COVID has been very hard on our house.”

Curfman pointed out that state officials should also consider CDC guidelines, which call for states to expand their definition of the high-risk adult population from 75 and older to also include 65 and older and those with underlying conditions and to vaccinate that group now.

But state officials have countered that they are dealing with President Joe Biden’s push to have elders vaccinated first, along with health care workers and teachers.

The Arc Minnesota and others have joined DSAMN in support. They are calling on the Minnesota Department of Health to reclassify adults with Down Syndrome to the top of the Phase 1B group of the COVID-19 vaccine rollout. They are currently in Phase 1C, putting them behind about 2.4 million people. That means that more than half of Minnesota’s adult population will have the opportunity to be vaccinated before people with Down Syndrome do.

“It is imperative that the best interests of all people with intellectual and developmental disabilities (IDD) be taken into consideration when making decisions about vaccine distribution. Research shows that adults with Down Syndrome are particularly impacted by COVID-19,” said Andrea Zuber, CEO of the Arc Minnesota.

Adults with Down Syndrome are at a significantly greater risk of death than all the groups currently identified in Phase 1B. An international study indicates that people with Down Syndrome who are hospitalized with COVID-19 and are 40 years of age and older bear most of the increased risk. Their mortality rate is 51 percent as compared to 7 percent for those under 40.

Zuber said the exclusion from the first phase of vaccinations shows that despite high risks for adults with Down Syndrome, discrimination against people with intellectual and developmental disabilities continues. “It is imperative that all people with IDD be elevated and valued for their capacity and intrinsic worth.”

Read the petition at change.org

There's still time for self-advocates to speak out

Self-advocates still have time to tell legislators their needs during the 2021 session of the Minnesota Legislature. Two of the largest rallies are in March.

Virtual Disability Services Day at the Capitol is Tuesday, March 9. The event, typically one of the biggest rallies, is led by the disability advocacy groups ARRM and MOHR and the Best Life Alliance. Advocates hope to protect employment and enrichment supports, elevate direct support staff and their wages, honor informed choice, and promote a better quality of life. High-quality day employment and day enrichment supports will be a focus, along with the need for competitive wages to hire quality direct support professionals and better transportation funding.

Participants can sign in to meet with their legislators. the Schule is to have the virtual rally in the rotunda at 10 a.m., via Zoom and the ARRM Facebook pace. That is followed by individual meetings. Some legislators may ask participants to sign up for an already-scheduled disability services meeting. The  ‘Day at the Capitol’ Social Media Storm goes on all day.

The Virtual Mental Health Day on the Hill is set for Thursday, March 11. The Mental Health Legislative Network goes online, as hundreds of people from around the state are expected to join in the event and share their views on mental health issues with legislators.

The network is composed of almost 40 statewide organizations concerned about the quality and availability of mental health services. The Network is co-chaired by NAMI Minnesota (National Alliance on Mental Illness) and Mental Health Minnesota.

Mental Health Day on the Hill kicks off with messages from legislators, as well as an overview of current mental health policy and funding issues from 9-10 a.m. Online appointments with legislators will follow throughout the day for mental health advocates to discuss their views on critical mental health needs for the 2021 legislative session.

Members of the network have already scheduled more than 30 Zoom meetings with legislators, with many more expected. Attendees will be matched up with the legislators and other advocates from their district for an online discussion of mental health concerns.

Network members are working to meet with as many legislators as possible on March 11. Sign up by going to www.namimn.org and clicking on Mental Health Day on the Hill. For more information, contact Sam Smith at ssmith@namimn.org.

Tuesdays at the Capitol led by the Minnesota Consortium for Citizens with Disabilities, continue this session in a virtual format. One easy way to check in is through the consortium’s Facebook page, at https://www.facebook.com/MinnCCD

Bill deadlines drawing near at capitol

The 2021 Minnesota legislative session has shifted into high gear as bill deadlines are coming up quickly at the state capitol. While having committee and floor session available online offers convenience, self-advocates are finding it difficult to reach out to state lawmakers in the usual ways.

One irony at a Senate committee hearing in mid-February on personal care attendant rate reform was that an advocate scheduled to testify was dealing with staff scheduling issues that day and was unable to appear virtually.

Deadlines are coming up fast. Committees must act favorably on bills in the house of origin by Friday, March 12. By Friday, March 19 committees must act favorably on bills, or companions of bills, that met the first deadline in the other body.

By Friday, April 9, committees must act favorably on major appropriation and finance bill. The regular session is to end May 17.

A lot of disability-related legislation is still in the queue but it’s not clear what will make it to the next level and what will be in the “what until next year” pile. Many bills still lack fiscal notes, which give lawmakers an idea of what a program or service would cost.

Hovering over everything is the state budget and how it has been affected by the COVID-19 pandemic. Advocates for spending increases or holding the line on a myriad of programs and services worry about how a projected state budget deficit of $1.27 billion for fiscal year 2022-2023 will play out. That could impact small budgets like that for the Minnesota Council on Disability to large budgets such as that of the Minnesota Department of Human Services. Services provided by the Minnesota Olmstead office, State Services for the Blind, Minnesota Commission for the Deaf, DeafBlind, and Hard of Hearing as well as programs for people with developmental disabilities, paratransit and rehabilitative services.

The budget situation is impacting recently added programs. Spinal cord and traumatic brain injury advocates are raising red flags about the elimination of what has become a $6 million in research funding in the state budget. The research funding was one of many items eliminated as Gov. Tim Walz’s administration made difficult choices.

Another frustration this session is that of bill processing through the state revisor’s office. Many bills including those for disability-related issues were continuing under language introduced in 2020.

Sign up for updates and find links to online hearings, live or recorded, at https://www.leg.mn.gov/ Track bills this session by going to https://www.leg.mn.gov/leg/legis

Tim's Desk -- March 2021

Well, February brought us back to a more typical Minnesota winter. In the Twin Cities, we had four consecutive days of “high” temperatures below zero, and in Greater Minnesota, overnight temps often went into the double digits below zero. Throughout the Midwest, all the way down to the gulf shore of Texas, we saw unusual cold temperatures and massive power failures. And of course, the COVID pandemic continues to ravage the country. We still don’t have enough access to vaccines, and the new more contagious variants are on their way here.

I hope you have received some news about your own options for the vaccine. If not, keep going to DHS’s Find My Vaccine site, and contact your local pharmacy and doctor to make sure they know you want to be vaccinated and are on their list. We all are hoping for life to go back to normal when we have “herd immunity” with 75 percent of people vaccinated. As things are going, we’re not to get to herd immunity until fall, unless we start speeding up. President Joe Biden has procured enough vaccine for everybody in the U.S. The manufacturers will be able to produce 3 million doses a day soon. If the U.S. can start vaccinating three million people a day, and Minnesota can start vaccinating 50,000 people per day, we can get to 75 percent by May. Let’s start aiming for that!

In Washington DC, the cold of winter is felt even in our government. Many of our political leaders are giving the cold shoulder to one another over the insurrection on January 6 and the impeachment of our previous president. There is still tremendous fallout over the way the transition of power in our government took place. Whatever side you’re on, it has really affected our democracy in many ways, some that we may not see or recognize for years.

In Minnesota government, the disability community is still struggling for compensation for our direct support professionals (DSPs) or personal care attendants (PCAs). Over the last 12 years PCAs have received only a thirteen-cent-per-hour raise, according to the 2020 legislative report. Under current law, the Minnesota Department of Human Services has limited ability to increase wages, because of lack of sufficient data on the total costs, including administrative cost, of providing services. It’s very clear to agencies, clients  and the DSPs themselves that the program has been underfunded for many years, at approximately $12.38 an hour average wage. We who use the PCA programs are all struggling to find caregivers, competing with fast-food franchises and the unemployment supplement provided during the pandemic.

The state has proved to itself again and again that the alternative to funding the PCA program is to fund nursing homes, a far more expensive option for the state, and a far more restrictive one for people with disabilities. Without PCAs at home, people are forced into group facilities, stripping away the kind of person-centered rights that are guaranteed by the state’s Olmstead Plan, which requires care in the least restrictive environment.

The Minnesota Legislature must address these issues more completely. For instance, in the last two biennial budgets, legislation increased the minimum wage that agencies could pay PCAs by $2.25 per hour, but only budgeted additional reimbursements of 68 cents per hour to the provider agencies. That meant that agencies could pay more only if they did so out of their own profit margins. And they already have to pay for unemployment, Social Security, worker’s compensation taxes, training and overtime for four holidays a year plus all the other unseen administrative costs out of the reimbursements they receive. To learn more about this, go look at SF 497/HF 663, https://tinyurl.com/sf497, and there you’ll be able to see the wording in proposed legislation supported by the Minnesota First Provider Alliance.

In other legislation, a current detail in the law governing PCAs assisting in Instrumental Activities of Daily Living (IADLs) says that IADLs include travel to medical appointments and participating in the community. It’s not specific about the kind of travel, and who drives. Agencies have been differing in how they interpret this, and some forbid their employees to drive for the client. A whole group of disability advocates are supporting a clarification in this law to specifically state that IADLs include PCAs who are “driving and accompanying the recipient in the recipient’s chosen mode of transportation.” You can find more about this legislation by reading Senate File 984 https://tinyurl.com/2021sf984.

If you’re interested in helping with any of the legislation above, lots of groups welcome your involvement. The PCA Reform Coalition, Minnesota Consortium for Citizens with Disabilities and Minnesota Council on Disability are active on Facebook and often post updates. Contact the Minnesota First Provider Alliance at webmaster@mnfpa.org. Another way to follow bills is at https://www.leg.mn.gov/leg/legis with the bill tracker.

I want to congratulate Nina Harrison for being crowned Ms. Wheelchair Minnesota on February 16. She will be a contestant in the Ms. Wheelchair America in August in Grand Rapids Michigan.  Unlike traditional beauty pageants, Ms. Wheelchair America is not a contest to select the most attractive individual. It is a competition based on advocacy, achievement, and communication to select the most accomplished and articulate spokeswoman for persons with disabilities. Good luck, Nina!

Have a good month, stay warm and get involved!

A sister's quest led to 75 years of research on MS

Finding treatment and a cure for multiple sclerosis (MS) motivated a young student to seek changes many years ago. The National MS Society marks 75 years’ history in 2021.

Sylvia Friedman Lawry was a university student in New York City when her brother Bernard was diagnosed with MS. he began experiencing problems with his balance and vision. Her family’s experience promoted her and her sister Alice to place an ad in the New York Times in 1945, seeking out others whose family had experienced the disease.

The ad said, “Multiple sclerosis. Will anyone recovered from it please communicate with patient.” The sisters received 54 replies from people as desperate as they were. Most asked to be informed if the two heard anything promising.

“I was looking for medical clues that might have helped my brother,” Lawry said in an interview with the New York Post in 1959. “But when the responses started to snowball and come from all over the country, I decided to give up the law and let my creative energies spill over into helping people with MS.”

Her work initially brought together prominent research scientists and led to the founding of the National MS Society in 1947.She co-founded the Multiple Sclerosis International Federation that same year.

State chapters of the MS Society began to open their doors, including the Minnesota chapter in 1957.

In 1965 Lawry called a meeting in Vienna, Austria, to persuade more countries to join the Multiple Sclerosis International Federation. She was joined by actress and activist Shirley Temple Black, who was also a campaigner for those affected by MS.

An account of the meeting on the MS Society website states that the meeting was tense and there was some uncertainty in the room. The turning point came when Shirley Temple Black stood up:

She looked around the room, making eye contact with many of the delegates. Then she asked, “What have you got to lose?” There really was no risk, she argued, financial or otherwise. “We’re all here for the same reason,” she insisted, “and that’s to wipe out multiple sclerosis.”

Lawry tirelessly worked to raise awareness of MS and to seek funding for research. She had no formal scientific education but quickly immersed herself in research and activism.

One accomplishment was her work with Sen. Charles Tobey (R-New Hampshire), whose daughter had MS, to lobby Congress. Eventually she, Tobey and many others persuaded them to adopt legislation establishing what is now the National Institute of Neurological Disorders and Stroke. The institute began in 1950.

Bernard Friedman died of MS-related causes in 1973. ]Lawry died on February 24, 2001. By the time she died, Lawry’s work had brought prominence to the need to study and find ways to treat and someday cure MS.

The History Note is a monthly column produced in cooperation with the Minnesota Governor’s Council on Developmental Disabilities. Past History Notes and other disability history may be found at mnddc.org

Access Press is hiring!

Access Press seeks a part-time, contract Business Manager to handle the paper’s operations. This contract is currently a remote-work position, with compensation of $650/month.

About Access Press:

The mission of Access Press is “Informing the disability community about topics of concern to us, by providing accurate information about disability issues to the general public.” We achieve this mission with our monthly print issue, which normally distributes 11,000 copies monthly all over the state of Minnesota, and through our website, social media, and events and advocacy. The paper just celebrated its 30th anniversary. The idea Business Manger candidate will be interested in both non-profit administration and print journalism; lived experience with disabilities is a strong plus.

Overview:

The Business Manager will support monthly newspaper production, coordinate distribution, communicate with advertisers and other stakeholders, handle basic bookkeeping and billing for the organization, and maintain the database. The position currently works closely with the Managing Editor, the board Transition Team, and social media and website consultants; in the future, it will also potentially work with an Ad Sales Manager and an Executive Director.

Main Duties:

Advertising: Communicate with organizations on ad specs and deadlines, ensure ads are camera-ready for print version of the paper and provide to webmaster if digital. Assist with special issues, sponsorship copy, etc. Ensure ads are on deadline. Ongoing, mostly focused in the 2nd and 3rd week of the month.

Distribution: Send monthly mailing list to the printer, arrange physical paper delivery, prepare and conduct smaller in-state mailing monthly. Coordinate distribution of paper to drop-sites as possible. Mainly the last week of the month/1st week of the next month.

Bookkeeping: Bill advertisers monthly per approved manifest (both for physical paper and digital advertising). Enter payments into accounting system (QuickBooks). Follow-up on all Accounts Payable. Bill also for: classifieds, DOO, sponsorships, and other transactions. Cut checks ideally 2x a month and arrange for signers; pay bills per this schedule. Record payments on Accounts Receivable and make deposits. Reconcile credit card and other lines of credit. Ensure accounting firm has all information needed to provide accurate monthly financials. Ongoing.

Directory of Organizations and Classifieds: Maintain copy for the annual Directory of Organizations. Provide to print edition 4x a year, update online as needed. Arrange listing placement with organizations. Also coordinate any classified ads. Ongoing but mainly quarterly.

Database: Maintain Bloomerang database with, at minimum: donors, subscribers, and advertisers. Manage subscriptions and renewals. Ongoing.

Communication: Provide information to social media consultant as needed. Support webmaster in monthly postings and web updates; assist Managing Editor in posting content as needed. Maintain email list and send periodic e-newsletter. Ongoing.

To Respond:

Please direct your application to Bethany@gladhillrhone.com no later than March 15, 2021, including a resume, a cover letter, and any other information you wish to be considered. Applications will be interviews on a rolling basis during the period, so it is an advantage to apply earlier. The position will start as soon as possible, likely in April 2021. If you have any questions, feel free to contact Bethany Gladhill at 612-414-3790 or bethany@gladhillrhone.com (preferred). 

Minnesota Public Radio must make changes

by K. Burgess

People have the right to public information regardless of ability status. Recently I found that Minnesota Public Radio (MPR) does not agree with this statement. They have for decades been in flagrant disregard of the various laws that they are responsible for following.

You may be asking yourself, as I did, how this entity that broadcasts news stories and podcasts about disability issues and is supported by many disability allies and organizations could be so flippant about access?

If you go to the MPR website you will find audio recordings of podcasts and news programs, but no transcripts. You can search high and low for some means of requesting a transcript and what you will likely land on is the “contact us” button. This leads you to a form which has a dropdown box of options for topics. The best fit is “other” which allows you to enter text into a box about your request. Once you choose to send this form it goes into what seems to be a black hole in the Internet. The only response is the automated reply that states they got your message but not all messages receive an individual response.

And then you wait, because you think, this is important and this isn’t some general question like when are you going to play Beethoven’s 5th Symphony again, so it should be worthy of an individual response.

Well, I for one am tired of waiting and expect MPR and the other entities out there doing the same things to step up and make their content accessible to everyone. It is 2021 and these laws have been in place since before the Internet. Specifically, I am referring to Section 504 of the Rehabilitation Act of 1973 which requires entities receiving federal funds to comply with the statute. Not to mention the Americans with Disabilities Act (ADA) and something called reasonable accommodations. MPR is not only in violation of the rehab act they also refuse to engage in the interactive process when a person with a disability requests a reasonable accommodation for something like a transcript.

Speaking as a person in the world of higher education, MPR is generally seen as a credible source. They offer news articles and other media on a wide variety of topics that are appealing. Well-meaning faculty include these articles and podcasts in their course materials or ask students to do research on a topic knowing that the student will likely end up using MPR as a resource and yet when students need accommodations, such as a transcript, they don’t exist. Nor can you find any reliable way to make a request.

There is an easy fix. There are actually at least a couple of options MPR and entities in similar situations have. 1) Post a transcript along with the podcast or other audio material. 2) Create a readily accessible spot on the website where a person can request a transcript and follow through on the requests that are made.

Option two isn’t ideal as it is not in full compliance with the ADA because you are not allowing the individual to access the information in the same time as someone who can listen to it, however, it is at least a baby step in the right direction.

MPR, stop denying access to the 11 million or more Americans that are deaf or hard of hearing. This doesn’t even consider those with other disabilities such as auditory processing disorders. Wake up MPR! We are living in 2021, in a pandemic, and people need access to high quality news and information. You could be that source if you would only comply with the law.

Editor’s note: Burgess reports that she is in contact with MPR and will keep Access Press updated on any changes.

It's tax time! Assistance is now available

Minnesota taxpayers could begin filing their state income tax returns February 12, the same day the Internal Revenue Service (IRS) began accepting federal returns.

The deadline to file both state and federal returns is Thursday, April 15 to file and pay state and federal income taxes.

With the COVID-19 pandemic, some traditional forms of tax assistance have changed. Libraries and community centers were help has been offered may not be open or may have limited hours.

The Minnesota Department of Revenueoffers tips to income tax filers as they prepare to file their taxes Some taxpayers may qualify for tax preparation. If Adjusted Gross Income (AGI) is $72,000 or less, a taxpayer may qualify to file electronically for free. Links on the website can be used to determine if free state and federal income tax filing is free.

One good source of information is United Way 211. Call 221 or go to the website to see what is available in your area. Go to https://www.211unitedway.org/

Free tax preparation sites available across Minnesota through the Volunteer Income Tax Assistance (VITA) and AARP Tax-Aide programs. Some sites offer in-person options while others offer virtual services. Most sites are open through April 15. The state website lists free sites so taxpayers can see what is available in their home area.

File electronically and choose direct deposit. Electronically filing a return and choosing direct deposit for a refund is the most secure and convenient way to file taxes and get a refund. Learn more about electronic filing options and the benefits of choosing direct deposit.

Check for accuracy. Enter the taxpayer name, and any dependent’s names, exactly as they appear on Social Security cards, Individual Taxpayer Identification Number (ITIN) cards or letters. Double-check bank routing and account numbers used on tax forms for direct deposit. Incorrect information on tax forms can result in refund delays.

Save receipts and other tax-related documents. If certain deductions or credits are claimed, be sure to include all required documentation when filing and save copies in case those are needed to reference in the future.

File returns by the April 15, 2021 due date, even if more is owed than can be paid. Pay as much as possible and contact state and federal officials about any outstanding balance, to set up a payment plan if you owe more than you can pay. Payments can be made electronically.

After tax forms are filed, anyone expecting a refund can use online programs to track the progress of refunds and see what if any steps must be taken to complete the processing of a refund.

Do not spend a tax refund until the money appears in a bank account. Returns may take longer to process because of the increase in attempted refund fraud due to scams, stolen personal information, and identity theft. The department will take the time necessary to review returns to make sure money is kept out of criminals’ hands.

If a taxpayer must move after filing returns, let state officials know by calling 651-296-3781 or 1-800-652-9094 (toll-free) to change an address.

The state is offering limited in-person services at its St. Paul office on weekdays 9:30 a.m. to 4:30 p.m. The service desk will accept and process payments by check, money order, or cash. Visit our website for more information about the services available.

Get the latest news and updates from the Minnesota Department of Revenue by following the department on Facebook and Twitter or by signing up for its email subscription list. FFI: https://www.revenue.state.mn.us/minnesota-department-revenue

From Our Community: Spinal cord and brain injury research jeopardized by state funding cut

Editor’s note: Gov. Tim Walz’s proposed budget eliminated $3 million in grants for spinal cord injury and traumatic brain injury research. Those committed to the research are weighing in.

Don’t defund the program

For the past six years, the State of Minnesota has jumped on board to help advance promising medical research in the spinal cord injury (SCI) and traumatic brain injury (TBI) arenas. But now, Gov. Tim Walz has decided to defund this crucial program. As one of the leaders in chronic spinal cord injury research, the Spinal Cord Society has known for a long time that a collaborative effort between many interested parties would be necessary for a viable SCI treatment to see the light of day. To lose a strategic partner like the SCI/TBI Program at this point would be devastating to current advancements like E-Stim, which is currently expanding in human trials.

This program needs to continue its mission for so many reasons. And one of the biggest is that E-Stim is on the brink to bust wide open. Researchers world-wide are already refining this technology and making it more user friendly AND less invasive. Just like the injury itself, functional returns are all different- some people get a small amount while others get lots back.

The important thing to remember is that EVERYONE, the injured, their families, friends, medical clinicians, researchers, etc. need to keep up the pressure on demanding change. Think about it, we’d still be driving Model Ts if someone didn’t WANT something different! No demand, no change.

Jeff Toby
Spinal Cord Society

A grassroots effort threatened

Our organization began as a grassroots effort by individuals directly affected by chronic spinal cord injuries (SCI). Our first mission was to draw attention to the lack of attention given to restoration of function in chronic SCI, and how restoration could significantly decrease the cost of care.

We did this by partnering with the Minnesota Brain Alliance and introducing the SCI/TBI Research Grant Program. The program is working as designed: accelerating scientific discovery to clinical treatment in the state of Minnesota. In addition to the current funding, organizations can and have also donated additional funds, continuing the community effort. To date, the program has funded 36 research projects and our organization has provided additional funding to two projects. The program must continue to build on the achievements realized.

Joe Dailey
Executive Director Get Up Stand Up 2 Cure Paralysis

Consider who is affected by cut

There are three things I want the governor and Minnesotans, especially Minnesotans with a disability, to know about the Minnesota SCI TBI Research Grant Program:

  1. It is the brainchild of the people most affected by these injuries. The advisory council that sets the priorities for funding has six of the 13 seats reserved for people from the SCI/TBI communities. This is by design. We in the community know that the best solutions arise when those closest to the injury are at the decision-making table.
  2. SCI/TBI community participation is why this government program works exactly as intended: to accelerate discovery to clinical implementation . Those who live with the injury together with those who research it prioritize and strategize how we can all win. As a result, people with paralysis have been in studies that have restored movement to paralyzed limbs, sexual function, bladder and bowel function and eliminated spasticity … those who live with these impairments know how meaningful these changes can be.
  3. The SCI/TBI Research Grant Program should remain in the Office of Higher Education. The governor has said that this program does not reflect the mission of the Office of Higher Education. I do not believe he understands that many of these research projects have included, supported and sometimes been directed by students at virtually every level of education from undergraduate to graduate, medical students, residents, PhD candidates and post docs. Supporting these students is exactly the mission of higher education.

Please ask Gov. Walz to not take away our seat at the table by cutting this effective and vital program.

Matthew Rodreick
Unite 2 Fight Paralysis

Veterans benefit from research

I am a cervical 5-6 level quadriplegic due to a spinal cord injury (SCI) serving in the Marine Corps. I have been in a wheelchair for 38 years and I have been involved with Paralyzed Veterans of America (PVA)for the past 18 years. PVA was founded in 1946 by surviving World War II SCI veterans. Life expectancy in SCI started to rise with advances in trauma care, penicillin, research in SCI rehabilitative protocols. VA Doctors and willing SCI veterans developed the first specialized rehabilitation methods including, specialized equipment and prosthetics. In Minnesota, the VA continues care and research in both SCI and TBI/polytrauma.

The Minneapolis VA SCI/D Center opened in 2009 and the Minneapolis Polytrauma Care Center became one of five VA TBI Centers for specialized care. Both programs work closely with researchers from the University of Minnesota and others.

In 2013, advocates from Get Up Stand Up 2 Cure Paralysis asked MN PVA to help advocate for a separate research budget in SCI/TBI where grant money would stay in Minnesota. 2015, Minnesota joined 14 or so other states that budgeted SCI/TBI research money. There is documented progress in the SCI/TBI research that is going on in Minnesota. Veterans and non-veterans are benefiting directly from the research that is being done here. Do not take away funding and delay the much needed research to reverse the effects from such a traumatic and instantaneous change in lifestyle.

Todd Kemery
President, Paralyzed Veterans of America Minnesota Chapter

Vaccine tracker is launched

Looking for a vaccine? The Minnesota COVID-19 Vaccine Connector is a tool that helps Minnesotans find out when, where, and how to get a COVID-19 vaccine. Filling out a simple online form means finding out to sign up for an appointment, and what the timeline and resources for vaccines are.

Who should sign up for the Minnesota COVID-19 Vaccine Connector? It is for all Minnesotans who have not yet been vaccinated. It notifies those who sign up when their turn for a vaccine is coming up.

Persons who have had vaccines don’t need to sign up. Nor should anyone who is already registered for the COVID-19 Vaccine Pilot Program or the COVID-19 Community Vaccination Program. Anyone who has completed the Minnesota COVID-19 Vaccine Education and Child Care survey is also already on the Vaccine Connector list, as are people who submitted the Health Care Connection Form. The Minnesota Department of Health will work with health systems and local public health agencies to notify these people about when and where they can get vaccinated.

Currently Minnesotans age 65 or older are eligible for vaccines. So are health care workers, and long-term care residents or staff members. Pre-kindergarten through Adult Basic and Community Education school staff member, or contracted school staff member can get vaccinated now, as can childcare staff members at licensed and certified childcare centers or programs.

Demand for vaccine far exceeds supply, and state officials encourage Minnesotans to remain patient as more vaccine arrives in the weeks and months ahead. Minnesota is continuing to distribute vaccines using a phased approach to immunize for impact by focusing on populations with heightened risk of getting COVID-19, as well as those at significant risk of severe illness and complications if they become infected.

Those who sign up for the Minnesota COVID-19 Vaccine Connector will get information about when, where, and how to can get the vaccine. Learn more at https://mn.gov/covid19/vaccine/connector/index.jsp

The time is now to establish a PCA rate framework

by the PCA Reform Coalition

The Personal Care Assistance (PCA) program, accessed by 44,000 individuals across Minnesota, is one of the most cost-effective Medicaid programs in our state, helping older adults and people with disabilities live and work as independently as possible in their communities. The PCA program is also the most diverse, as 62 percent of service recipients are Black, indigenous and people of color (BIPOC). A majority of the workers are women and BIPOC.

The services provided by PCAs, who help with a wide range of personal supports, has been a critical lifeline for thousands of our neighbors, family members, and friends since the 1970s.

Today, Minnesota’s PCA program – and the individuals who depend on it – are in crisis.

Over the last 12 years, the program’s reimbursement rate has only been increased by $1.56 per hour — an average increase of $0.13 per year. The current reimbursement rate is just $4.45 per 15-minute unit or $17.80 per hour.

PCA Choice employees are required to be paid $13.25 per hour, per the collective bargaining agreement with SEIU.

According to a 2020 legislative report the average PCA makes just $12.38 per hour. The average wage includes both Choice and Traditional workers – resulting in high turnover and causing reduced quality of care which is creating instability in the lives of people with disabilities and older adults.

Some Minnesotans have been left alone without care due to the PCA staffing shortages across Minnesota.

Other individuals who rely on PCA services have moved into more costly, restrictive settings like nursing homes or residential care facilities.

To ensure the sustainability and improve the quality of Minnesota’s PCA program, we must:

  • Establish a data-driven rate reimbursement framework.
  • Increase wages for PCAs and the Qualified Professionals (QP) who supervise the PCAs.
  • Decrease the requirement for the enhanced rate from 12 to 10 hours for individuals with the highest support needs.
  • Consistently collect statewide service provider data

Ensuring PCA Program Integrity

In addition to the needed PCA Rate Framework, the Minnesota Legislature has an opportunity to develop high-quality standards for all provider agencies that will add value to program participants, attracted to retain

PCAs, and ensure the sustainability of this crucial service.

To ensure sustainability and improve the quality of Minnesota’s PCA program we must:

  • Raise the bar for enrolled PCA agencies:
    • Require providers to update Department of Human Services (DHS) documents annually (bonds, insurances etc.)
    • Provide proof of two payrolls or a line of credit at enrollment and revalidation
    • Establish policies and procedures for provider operations and programs
  • Enhance PCA provider reporting requirements:
    • Provide financial statements demonstrating at least 72.5 percent of the unit rate is paid to PCAs
  • Consistently collect statewide service PCA provider data

By formalizing best practices statewide, members of the Minnesota Legislature and the general public will be able to trust in the stewardship of Medical Assistance dollars which fund the PCA program.

Increased provider standards will reduce and prevent fraud, waste, and abuse in the PCA program, while improving the quality of services accessed by individuals with disabilities and older adults.

The editorial was prepared by the PCA Reform Coalition, which includes several disability service providers.

75 Years of Progress and a Good Journey

The mission of the National Multiple Sclerosis Society is: We will cure MS while empowering people affected by MS to live their best lives.

Chris Granias is living his best life. He hasn’t let MS stop him. Chris is an accomplished composer, piano performer and educator who has been living with MS since the early 1990s. Since his diagnosis, he has used his creative talents to raise money for the MS Society and bring people together through his music.

The Chicago native received his doctorate in theory and composition from the University of Minnesota, a master’s degree in piano performance from Northwestern University, and a master’s degree in composition from Drake University.

In 2017, Chris developed a concert series entitled Kalo Taxidi which is Greek for “good journey.” Every year, this fundraising event features original music from Chris along with performances from friends and former colleagues, some of whom also live with MS. While the concert is typically held in-person, the 2020 Kalo Taxidi concert was turned into a virtual event due to Covid-19. After months of planning and hard work, Chris was able to put together a 90-minute, prerecorded concert featuring 9 artists from across the Upper Midwest. Chris took his passion for performing and composing music and turned it into an innovative, successful fundraiser for the MS Society. You can find Chris’ 4th annual Kalo Taxidi concert on YouTube. Kalo Taxidi is what the National MS Society calls a “DIY” — an opportunity to harness your passion to raise awareness and critical funds for MS in new and creative ways.

While MS has limited Chris’ ability to do many things such as walk and drive, he maintains a positive attitude and often quotes his favorite motto, “MS is not going to stop me.” Daily piano practice has become a part of his physical therapy and he continues to write his own music to keep his mind sharp. He is so passionate about raising money for the Society and helping others who live with MS. Chris hopes that many will witness how his MS, along with his music, has become a journey that not only raises money, but provides inspiration and awareness.

March 7-13 is MS Awareness Week, and this year marks an important milestone. 75 years ago, a movement began that changed the world for people affected by MS. When Sylvia Lawry’s brother, Bernard, began experiencing visual and balance problems in 1945, she and her sister Alice placed a classified advertisement in The New York Times: ”Multiple sclerosis. Will anyone recovered from it please communicate with patient.” The sisters received 54 replies, and the MS movement was born. Ms. Lawry, a young woman without a scientific background, went on to gather 20 of the nation’s most prominent research scientists and founded what would become the National Multiple Sclerosis Society. Her passion and perseverance launched a movement that’s led to more breakthroughs than the world has seen for any other neurological disease.

On our shared journey, we have transformed what it means to live with MS and provided global leadership to help achieve our vision of a world free of MS. Together, with Chris and countless others, we celebrate 75 years of progress, and invite you to join the movement. For more information on DIYs, MN Walk MS and Bike MS events this spring and summer, and to learn more about research and life-changing breakthroughs and supports, visit nationalmssociety.org. If you or someone you know could use a caring partner in their MS journey, contact an MS Navigator at 1-800-344-4867

Assistance with this article was provided by Chris Granias, musician; Emerging Events Manager National MS Society Katie Milion; and Kathleen O’Donnell, Upper Midwest Chapter President National MS Society Kathleen O’Donnell.

New Board Member Announced

MDI announced that it has appointed Megan Kellin to its board of directors. Megan is an entrepreneur and publisher who owns several businesses in northeast Minnesota, including the Lake and Company Magazine and Shop, Lake Time Magazine, Lake Bride Magazine, be.Media House, Hotel Rapids, The Joyride, Little Lazy Lodge, Kellin Reclaimed and Cohaus Collective.

“We are thrilled to welcome Megan to MDI’s board of directors,” said Jill Hesselroth, MDI board chair. “Megan’s commitment to expanding opportunities for people with disabilities, both personally and professionally, paired with her innovative and visionary endeavors makes her an incredible asset to the organization.”

Kellin will serve a 3-year term. She currently serves as board member for the Itasca Economic Development Corporation, an organization focused on creating and retaining quality jobs in Itasca County, as well as the Entrepreneur Fund, which actively partners with entrepreneurs in northeast Minnesota and northwest Wisconsin to spark growth and achieve success. She feels strongly about MDI because of its commitment to providing meaningful employment for people with disabilities.

“I am very much looking forward to working with the team at MDI,” said Kellin. “MDI’s mission to provide employment opportunities to people with disabilities is near and dear to my heart, as is its commitment to providing jobs and growing the business community in northeastern Minnesota.”

Kellin and her husband have three kids. She is very close to her brother-in-law Marcus, who works at MDI Cohasset and has Down syndrome. Marcus is an inspiration for Megan’s advocacy work.

Harrison is Ms. Wheelchair Minnesota

Inspiring other to use their voices and advocate for themselves is a goal for Nina Harrison, the new Ms. Wheelchair Minnesota. She also hopes to raise awareness of issues facing direct care staff, as both as a client and a former health care worker.

Harrison was crowned in February and will represent the state at the national Ms. Wheelchair America. The pageant will be held in August in Grand Rapids, Michigan in August.

Harrison brings a lifelong understanding of disabilities to her new role. As a youngster in Chicago, she helped care for an uncle who used a wheelchair. “I never thought I’d be in a wheelchair myself,” she said.

She worked as a certified nursing assistant (CNA) while raising her two children as a single mother. After finishing high school in Chicago, Harrison lived in different places before settling here.

Years ago Harrison was mistakenly diagnosed with multiple sclerosis. Her actual diagnosis is neurosarcoidosis, paraplegic. She is considered to be legally blind because her optic nerves are severely damaged in both eyes. She relies on assistive technology. She has used braille but jokes that reading braille and keeping fingernails manicured don’t mix.

Harrison lives on St. Paul’s East Side Her son is 26 and her daughter is 23. She also has two grandchildren. She very much enjoys spending time with family.

Ms. Wheelchair America is unlike any other pageant. Its focus in on women who are effective advocates and communicators, who can speak to issues women who use wheelchairs face. Harrison said her understanding of both sides of the direct care crisis give her a unique perspective as an advocate.

“Personal care attendants and other health care staff aren’t paid enough, and that directly affects their clients,” she said. “It’s an eye-opener and help to raise awareness of this issue.” She enjoys doing research and will be digging into this important issue, to raise it at the pageant in August.

Harrison enjoy church and is looking forward to in-person services again. She enjoys activities at the M Health Fairview Achievement Center, trying her hand at pastimes including candle making and painting. She also likes having her hair and nails done,

She also wants women who use wheelchairs to be their best selves. “Don’t limit yourself because you are in a wheelchair,” she said. “If you have a voice, let it be heard.”

Handi Medical of St. Paul is among the businesses helping to support the Minnesota pageant, which has been dormant. Information on sponsorships will be available soon.

In Memoriam -- March 2021

Blackstone was skilled mediator

Barbara Blackstone was known as a mediator, especially when it came to matters involving the Americans with Disabilities Act (ADA). Blackstone was director of the Minnesota Office of Dispute Resolution in the late 1990s and early 2000s. For almost two decades she worked on ADA-related disputes through the Key Bridge Foundation.

Blackstone died in January as a result of a fall and subsequent traumatic brain injury. She was 79 and most recently lived in Edina.

A Wisconsin native and 1963 Carleton College graduate, Blackstone lived in the Chicago area for a time. She became deeply involved in the women’s rights movement, worked as a city planner and then came back to Carleton College as alumni director.

She then became involved in the field of conflict and dispute resolution and mediation, as one of the first female mediators in Minnesota. Blackstone developed a statewide peer-mediation program for state government and the state college and university system. She later worked for the Washington, D.C,.-based Key bridge Foundation. the foundation is a non-profit organization providing ADA conflict resolution services, community mediation, and youth services.

She lived in Oregon for a time, returning to Minnesota in 2017. She is survived by two daughters, and two brothers. Services have been held.

Ryg dedicated to Thompson Hall

Josephine M. Ryg was half of a Minnesota couple with a long commitment to the state’s deaf and hard of hearing community. Ryg, 95, died in late 2020. She was 95 and lived in Minneapolis.

Ryg and her husband Louis were married for 63 years before he died in late 2011. He was the founder of the Metro Deaf Bowling League, a board member of the Metro Deaf Council, and president of the Metro Area Deaf Lions International.

Both were active in the Minnesota Deaf Society. She was the cook at Charles Thompson Memorial Hall in St. Paul, the nation’s oldest social gathering place for people who are deaf and hearing-impaired.

She is survived by a sister, three sons, six grandchildren and seven great-grandchildren. Services were held earlier this year.

Welcome to Partners in Employment

Looking for a job? MNCDD has completely revised its online Partners in Employment course. The free course focuses on competitive integrated employment and its different forms. The self-study course is designed to help people with developmental disabilities, their family members and supporters:

Partners in Employment explores the employment system for people with developmental disabilities, common employment options and employment strategies. It also discusses accommodations and common barriers to employment that people with developmental disabilities encounter. The course also offers a historical perspective on how people with developmental disabilities have worked.

Throughout the course participants will learn from the experiences of people with developmental disabilities who have found competitive work in the community. The course also explores the hiring process and some key differences people with developmental disabilities should be aware of. The course can be taken at one’s own pace. Go to https://partnersonlinecourses.com/partners-in-employment/

Partners in Policymaking Seeks 2021-2022 Participants

Want  to be a more effective self-advocate? Need to speak for young children who live with developmental disabilities and learn about the system that serves them? It’s time to consider the 2021-2022 Partners in Policymaking Program. Minnesota adults with disabilities and parents of children with developmental disabilities are urged to look into the program now and apply before the July deadline.

The program was created by the Minnesota Governor’s Council on Developmental Disabilities 35 years ago, and has been offered nationally and internationally. Through informative and interactive sessions, Partners teaches leadership skills and the process of developing positive partnerships with elected officials and other policymakers who make decisions about the services that they and family members use.

Since 1987, more than 1,100 self-advocates and parents have graduated in Minnesota. Partners in Policymaking is a free program for participants, covered in part by a federal appropriation from the Office on Intellectual and Developmental Disabilities to the Minnesota Governor’s Council on Developmental Disabilities

Consider the program requirements before applying. Participants must commit to attending eight sessions over the course of a year, September through May. No session is offered in December. They must have an interest in learning and practicing new skills in a comfortable and safe environment. They also need to have a desire to build and strengthen a network of people from diverse cultural backgrounds and life experiences, and a willingness to learn from national and state experts with shared vision and values.

Homework assignments are given after each class and turned in at the following session.

Fall marks the 39th class. The program is designed for parents of young children with developmental disabilities and adults with disabilities. Sessions are held on Friday and Saturday except in March which is on Sunday and Monday. The sessions are at a Bloomington hotel, with overnight accommodations for those who travel a distance to attend. Class members are matched and housed in double occupancy rooms. Mileage reimbursement is also available for class members. Meals, class materials and interpreter or language translation services are also covered.

For respite/childcare and personal care attendants (PCA), reimbursement up to a maximum dollar amount per weekend session is available for participants needing these services when another funding source does not pick up these expenses. The program does not provide onsite childcare services. Family members are not permitted to stay at the hotel during the weekend training sessions unless a family member is serving as a PCA to a class member.

Class size is limited to 35 participants. At this point in-person classes are planned, with social distancing and other safety practices.

Application deadline is July 9, Decisions will be made by August 13. Anyone with questions can contact Brenton Rice at the Odyssey Group, 651-242-6589 or Brenton@TOGevents.com. Or visit www.PartnersinPolicymaking.com

Regional News -- March 2021

Riding Metro Mobility? Remember your mask

Metro Mobility requires everyone who is boarding, riding or exiting a paratransit vehicles to wear a mask that covers both their nose and mouth for the entire trip. Wearing masks that completely cover the mouth and nose reduce the spread of COVID-19.

A new federal regulation issued by the Centers for Disease Prevention and Control and the Transportation Security Administration went into effect February 2 and will remain until at least May 11, 2021. Metro Mobility has required facial coverings onboard since May 2020, following orders from Gov. Tim Walz and guidance from the Minnesota Department of Health.

Metro Mobility drivers will provide riders with a free mask if a passenger is not wearing one or does not have a mask.

If a disability makes it impossible or limits the ability to safely wear a mask, the passenger must have a documented exemption in the file. Anyone without an exemption noted on file who refuses to wear a mask after one is offered, will be denied a ride.

To learn more about exemptions or to ask questions about the new regulations, contact the Metro Mobility Service Center Phone: 651-602-1111 TTY: 651-221-9886 or MetroMobility@metc.state.mn.us.

As of March 1, Metro Mobility will stop providing free rides to people working in Twin Cities-area health care facilities. That is to accommodate a growing number of paying customers who are returning to the system.

The paratransit service saw its busiest week since the pandemic began between January 31 and February. 6. During that time paying customers took 23,916 trips,

Add in free rides for nurses, doctors, aides and anybody else who works in a hospital or clinic, plus a few hundred grocery deliveries, and Metro Mobility buses provided 33,837 rides that week, according to service operator Metropolitan Council.

Ridership was down 80 percent early in the pandemic, which freed up capacity to offer free rides to health care workers. As demand from regular riders rides, coupled with pandemic social distancing regulations, more of the small buses have been running to meet demand.

About 2,900 health care workers collectively have taken about 228,670 free rides since they began in April 2020. Those workers will still be able to book trips on Metro Mobility, but starting March 1 they must pay the same fare as regular riders. Fares are $3.50 per ride or $4.50 during rush hours.

The change was made as more health care workers have access to the COVID-19 vaccines.

(Source: Metro Mobility)

Slur provokes outrage

An attorney for Anoka County Commissioner Matt Look has sent cease-and-desist letters to two women who have publicly accused the commissioner of harassment, claiming the women made slanderous statements online about Look. They in turn are upset about his use of a slur that draws on negative connotations of people with disabilities.

Joseph Field, an Anoka estate planning attorney, sent two cease-and-desist letters to both Danylle Peardon and Rachel Keller, weeks after the women shared their allegations against Look with the Star Tribune.

Peardon, of St. Francis, and Keller, of Ramsey, said that Look sent them harassing or threatening personal messages following public interactions with him on Facebook. Police reports have been filed.

What has sparked outrage among disability advocates is Look’s use of the slur “libtard.”

The Anoka County DFL unanimously passed a resolution at its monthly meeting in February condemning Look for his use of the term “libtard,” which Look used in text messages to other commissioners after Peardon’s allegations first surfaced.

The county DFL also called on the board to condemn Look’s use of the word and set a code of ethics “to make clear that such language has no place in the business of Anoka County.”

The harassment allegations have brought Look under scrutiny, with some residents calling on him to resign and for the commissioners to adopt a code of ethics to prevent such conduct in the future. More than 400 people have signed an online petition calling on him to step down.

Look has responded to the ongoing criticism by denouncing the harassment allegations and claiming instead that the two women are harassing him. He said at a recent board meeting that he will not step down from the position he’s held the past decade, most recently winning re-election in November with 64 percent of the vote.

(Source: Star Tribune)

LSS takes over operations

Lutheran Social Service of Minnesota (LSS) assumed operations on February 1 for the Senior Companion Program in North Dakota, assuring that essential support through this service continues for older adults. The change comes as a result of Lutheran Social Services of North Dakota’s decision to close due to significant financial struggles in their affordable housing development services.

“Lutheran Social Service of Minnesota provides a natural home for the Senior Companions program, given its experience in delivering the same services in an adjacent state,” said Bob Otterson, President and CEO, Lutheran Social Services of North Dakota. “I’ve been in the sandwich generation, and I know firsthand the importance of personal connections for our older adults who feel isolated. I’m so pleased that our colleagues from Minnesota will continue this help to our neighbors in North Dakota.”

The Senior Companion Program, funded by AmeriCorps Seniors, matches trained companion volunteers age 55 and older with other older adults to provide weekly visits and assist with errands, grocery shopping and transportation to appointments to help older adults remain healthy and in their homes. Program volunteers also report being healthier and happier as a result of their service.

Lutheran Social Service of Minnesota offers a wide variety of services to older adults in Minnesota, including the Senior Companion Program – a service they have operated statewide for 30 years. Currently, 223 volunteers provide weekly support and friendship to 873 older adults in Minnesota. North Dakota’s program will add 370 older adults and 71 volunteers in 32 counties. Four employees from the North Dakota program will be joining Lutheran Social Service of Minnesota to continue services in North Dakota.

“When we learned that Lutheran Social Services of North Dakota decided to close its doors, we immediately reached out to see how we could offer assistance to support individuals who rely on essential care,” said Patrick Thueson, CEO of Lutheran Social Service of Minnesota. “We’re glad to be able to continue the important work of Senior Companions in North Dakota.”

(Source: LSS of Minnesota)

Teaching minor is offered

The University of Minnesota Duluth and Assistant Professor Daehyoung Lee is now part of the effort to increase the number of local physical education teachers who are also licensed to teach students with developmental and physical disabilities. The federal government mandates that all public schools offer the option to students with disabilities, but it doesn’t require teachers to become certified in the area in order to do so.

“It’s possible you can teach (developmental adapted physical education) without a license, but the problem is there’s a lack of teachers who are really qualified to teach,” Lee said.

Of the 21 colleges in Minnesota that offer physical education degrees, only six of them offer developmental adapted physical education minors.

UMD hired Lee to develop the minor so that the university’s physical education students can also receive licensure to teach students with special needs. UMD began offering the minor again this semester after the program ended roughly 30 years ago.

Lee said that while students studying physical education are the only ones who can qualify for the add-on licensure, he’s hoping to open the courses up to everyone.

“I’m trying to open my door to our pre-physical therapy, occupational therapy and special education teachers,” Lee said. “They still have to understand what kinds of disability-related challenges these students have.”

A big part of the curriculum is learning about medical conditions common among people with disabilities. For example, Lee said, roughly a quarter of people with Down syndrome have a condition called atlantoaxial instability.

“If they have pressure on their neck, then what’s going to happen is spinal cord injury. A lot of teachers aren’t aware of that condition,” he said. “So if you do not know about that information you can actually find a lot of troubles.”

In addition to teaching how to prevent harm when teaching physical education to students with disabilities, the program seeks to make physical activity accessible and attainable to all people throughout their lifetime.

(Source: Duluth News-Tribune)

Accessible movies

After being closed during much of the COVID-19 pandemic, many movie theaters have reopened. Distance requirements are in place for patrons and masks are required for all. Other measures are being taken to keep patrons safe, such as increased cleaning.

Changes have been made since theaters were last open. Some theaters have closed for good. Almost all theaters have some area for wheelchair or power scooter seating, as well as companion seating. Most theaters offer assisted listening devices of some types.

The Science Museum of Minnesota Omnitheater is expected to reopen in the near future. It offers the immersive movie experience enjoyed by IMAX fans. The museum and theater are at 120 Kellogg Blvd. W., St. Paul. Tickets are separate from museum admission. Access features of films include captioning, audio description, amplification, Spanish alternate language (via headset) and large print script.

Accommodations for other visual, hearing or sensory disabilities vary by theater and can change over time, so call or email to a theater to see what is new. Keep in mind that some small town theaters, which may be operated by volunteers or a mix of volunteers and staff, may not have the same accommodations found in larger theater chains.

Be aware that not every movie is designed to be accessible, so having assistive technology available doesn’t guarantee the chance to see a new movie.

Rear Window Captioning displays reversed captions on a light-emitting diode (LED) text display which is mounted in the rear of a theater. Patrons who are deaf or hard-of-hearing use transparent acrylic panels attached to their seats to reflect the captions, so they appear superimposed on the movie screen. The reflective panels are portable and adjustable, enabling the caption user to sit anywhere in the theater without bothering patrons in surrounding seats.

DVS Theatrical presents concise descriptive narration of visual cues, including actions, settings, scene changes, facial expressions and silent movement, through an FM or infrared system, making movies more meaningful to people with vision loss. The moviegoer hears the narration on a headset.

CaptiView closed caption viewing systems allow moviegoers to read movie dialogue.

Digital Theatre Systems or DTS superimposes open-captions over the bottom of movie theater screens.

Fidelio is a wireless audio system that delivers descriptive narration for people with vision loss and amplified sound for people with hearing loss. Patrons can get a compact audio receiver with a plug-in headset at the box office or bring their own headset. Descriptive narration and closed captioning availability are subject to the content made available from distributors.

Other websites outline additional options. The American Council of the Blind has an Audio Description Project to enhance movies as well as museums, national parks and live events. It includes many links to audio-described DVDs, Blu-ray discs, television programs and more. Visit www.acb.org for more information.

WGBH in Boston has worked for years on making movies accessible to all and has been involved in the creation of various forms of accessible technology for moviegoers, through its National Center for Accessible Media. Visit www.wgbh.org for more information.

Captionfish, at www.captionfish.com, is an Internet search engine. it can help moviegoers find captioned films by city.


Here’s a list of Minnesota movie theater chains and access options

AMC Theatres has theaters in Apple Valley, Coon Rapids, Eden Prairie, Edina, Inver Grove Heights, Mankato, Maple Grove, Roseville. AMC offers offer assisted listening devices available at all of its theaters, according to the main AMC website Some theaters offer closed captioning, CaptiView and Fidelio. The Roseville and Eden Prairie theaters have offered sensory film experiences through the national Autism Society. FFI: www.amctheatres.com

CEC Theaters has theaters in Albert Lea, Alexandria, Andover, Bemidji, Fergus Falls, Marshall, Mountain Iron, Owatonna, Winona and Hudson, WI. Not all of the Minnesota theaters had reopened when Access Press went to press. Sensory-friendly showings at locations that have had requests from the community. FFI: www.cectheatres.com

Cinemark Theatres operates Cinemark River Hills Movies 8, Mankato. Contact the theater to ask about accommodations.. FFI: www.cinemark.com

Emagine Theaters are in Delano, Eagan, East Bethel, Lakeville, Monticello, Plymouth, Rogers, Waconia and White Bear Township. Theaters offer open captioning, assisted listening devices, personal open caption devices and descriptive video devices. FFI: www.emagine-entertainment.com/accessible-screenings/

Landmark Theatres operates Edina Cinema, and Uptown Theatre and Lagoon Cinema in Minneapolis. Landmark offers CaptiView and Fidelio. FFI: www.landmarktheatres.com

Mann Theatres has locations in Baxter, Champlain, Grand Rapids, Grandview and highland in St. Paul, Hibbing and Plymouth. Not all theaters have reopened. Contact theaters to learn about accommodations. FFI: https://manntheatres.com

Marcus Theatres has theaters in Duluth, Elk River, Hastings, Hermantown, Oakdale, Rochester, Rosemount, Shakopee and Waite Park. Marcus has assisted listening devices and CaptiView at all of its Minnesota locations. Closed captioning, open captioning, descriptive narration and assistive listening device available. FFI: www.marcustheatres.com/amenities/theatre-technology/accessibility-devices

Odyssey Theaters are in Austin, Detroit Lakes, Hutchinson and Rochester. FFI: http://www.odysseytheatres.com/

ShowPlace ICON has one Minnesota theater, Showplace ICON at West End, St. Louis Park. It offers assistive listening devices, closed captioning and descriptive video services. FFI: www.showplaceicon.com

People with disabilities need equity in vaccines

by Joan Willshire

Where are the COVID-19 vaccinations for people with disabilities living in the community?

I continually see more and more articles being written with disturbing headlines asking why people with disabilities aren’t in the front of the line to receive the COVID-19 vaccine. That is especially concerning since one in four adults live with a disability according to the Centers for Disease Control and Prevention (CDC).

Let me be clear on the population I am speaking about. These are people with disabilities who are living in the community of their choice independently, not living in institutions. I need to point out that there is irony here as for the last 20 years states have worked very hard to get people out of institutional settings and into the community of their choice. This was done through the 1999 U.S. Supreme Court ruling of Olmstead versus L.C.

The Minnesota Department of Health (MDH) has been doing a fantastic job during this pandemic of COVID-19. However, with the vaccine rollout there are some concerns about prioritization of the vaccine distribution. The state of Minnesota is following the CDC guidelines as are most states in the nation in regard to the prioritization of who will get the COVID-19 vaccine first. The state is also now having conversations about when children might be able to get vaccinated.

How many more groups of people get to go in front of the line before people with disabilities who are living outside of institutions and live in the community get the vaccination? I know we all want to get vaccinated to end the COVID-19 pandemic, but a plan must be created now for this sector of the population.

People with disabilities are more at risk of contracting the COVID-19 virus as well as dying from the disease. Individuals with developmental disabilities or intellectual disabilities are even more at risk than other people with disabilities of getting seriously ill and dying from the COVID-19 virus.

As a person with a chronic medical condition I have been asked constantly if I have received the vaccination for COVID-19 yet by relatives, friends, and even my physicians I see. My response is NO! They are all utterly amazed. I have been living with a chronic autoimmune disease for decades and have many underlining comorbidity issues as a result. As a result I am now at greater risk than most people are, even though I am a healthy and active working individual.

We do understand that the aging community has been hit extremely hard with this virus. But if you look at the issues that seniors encounter they literally mirror the issues of people with disabilities have.

There has been a lot of discussion regarding equity and diversity regarding the COVID-19 pandemic. Don’t get me wrong – this is something we must be doing. What we also must be doing is including people with disabilities in this conversation too. That is not happening. We need to remember that nearly 25 percent of the population has a disability and we need to be included in the equity and diversity discussion as well. We are the only minority group that you can become a member of at any point in one’s life. MDH has forged a new model of community partnership certainly help in the area of diversity equity.

I have been told to contact my healthcare provider in regard to COVID-19 vaccination availability. And when I ask them the status of COVID-19 vaccinations I they have no idea when a vaccine will be coming to them. So again we are forced to fall in line with a majority of the population that does not have any comorbidities issues whatsoever. This is not only wrong but is also deadly for a person like me with a disability.

The new vaccination connector that was just rolled out by MDH is only a step in the right direction for everyone to know where they are in line to receiving a COVID-19 vaccine. The list of medical conditions that was given was certainly in adequate in regard to listing various medical conditions. But the bottom line it’s a start to get us all ready to receive the vaccine.
There is still time to move up people with disabilities who are not living in institutions but in a community setting on the COVID-19 vaccination list. But with the virus mutating that time is running shorter. The pandemic is far from over and it’s time to demand that people with disabilities get moved up on the list along with the seniors.

Joan Willshire is president of Willshire Consulting LLC, a company that focuses on disability/inclusion and how people with disabilities can safely return to work after COVID-19. Joan most recently was the executive director of the Minnesota Council on Disability.

Radio Talking Book -- March 2021

Power outage had an impact

Just as Access Press went to press for March, the State Services for the Blind/Radio Talking Book operations had a major power outage. be aware this will affect some books.

There’s an App for Radio Talking Book

Enjoy Radio Talking Book anytime and anywhere on a hand-held mobile device, for either iOS or Android. Just visit the Apple App Store for iOS, or Google Play for Android, and download the Minnesota Radio Talking Book app. It’s quick, it’s easy, and provides a convenient way to tune into RTB wherever and whenever.

Books broadcast on the Minnesota Radio Talking Book Network are available for loan through the Minnesota Braille and Talking Book Library in Faribault. The catalog is at https://education.mn.gov/MDE/fam/mbtbl/, click on the link Search the Library Catalog. Call the Minnesota Braille and Talking Book Library at 800-722-0550, Monday-Friday, 9 am – 4 pm CST for details. Persons living outside of Minnesota may obtain copies of books via an inter-library loan by contacting their home state’s Network Library for the National Library Service.

The sampling published monthly in Access Press doesn’t represent the full array of programming. Many more programs and books are available.

To find more information about Minnesota Radio Talking Book Network events go to the Facebook site, Minnesota Radio Talking Book. Audio information about the daily book listings is also on the National Federation for the Blind (NFB) Newsline. Register for the NFB Newsline by calling 651-539-1424.

The NFB-NEWSLINE service provides access to more than 500 magazines and newspapers, plus information on COVID-19 in the “Breaking News” section. To learn more, visit www.nfb.org/programs-services/nfb-newsline.

Donate to the State Services for the Blind at mn.gov/deed/ssbdonate

Listen to RTB’s live or archived programs online at www.mnssb.org/rtb

Chautauqua*
Monday – Friday 6 a.m.

Superbugs, nonfiction by Dr. Matt McCarthy, 2019. One of the most pressing challenges facing modern medicine is the quest to cure antibiotic-resistant infections. Read by Yelva Lynfield. 12 broadcasts; begins Wed, March 17.

Past is Prologue*
Monday – Friday 11 a.m. 

Dewey Defeats Truman, nonfiction by A.J Baime, 2020. Journalist A.J. Baime tells the story of the 1948 presidential election, one of the great American political stories, as Harry Truman mounted a historic comeback and claimed a new course for America. Read by Stevie Ray. 16 broadcasts; begins Mon, March 15.

Bookworm*
Monday – Friday noon

Mirror Shoulder Signal, fiction by Dorthe Nors, 2016. Sonja is a woman in her forties, trying to move in the right direction. But how do you find yourself when there’s no one to ask directions? Read by Anne Obst. Five broadcasts; begins Tue, March 16.

News of the World, fiction by Paulette Jiles, 2016. After the Civil War, ten-year-old Johanna travels across Texas to her aunt and uncle’s home after living with Native American warriors who killed her parents. Capt. Jefferson Kyle Kidd, a 70-year-old veteran, guides Johanna home. Read by Pat Muir. Seven broadcasts; begins Tue, March 23.

The Writer’s Voice*
Monday – Friday 1 p.m.

Nine Irish Lives, nonfiction edited by Mark Bailey, 2018. Nine Irish Americans tell the stories of nine remarkable immigrants, and our shared values as Americans. Read by Therese Murray. Nine broadcasts; begins Wed, March 10.

Reading With Patrick, nonfiction by Michelle Kuo, 2017. A teacher moves to Arkansas and helps a young man learn to read. Years later she returns to find him in jail for murder. Read by Michelle Juntunen. 11 broadcasts, begins Tue, March 23.

Choice Reading*
Monday – Friday 2 p.m.

Hear My Voice, fiction by Marcia R. Rudin, 2017. Three women make profound sacrifices, as each pursues a calling in the clergy. Read by Pat Muir. 14 broadcasts; begins Mon, March 22.

Afternoon Report*
Monday – Friday 4 p.m.

The Crusade for Forgotten Souls, nonfiction by Susan Bartlett Foote, 2018. In the 1940s, Minnesota took the first steps toward creating a modern mental health system. Read by Pat Muir. 12 broadcasts; begins Tue, March 16.

Night Journey*
Monday – Friday 7 p.m.

The Searcher, fiction by Tana French, 2020. After retired Chicago cop Cal Hooper moves to a small Irish town, he’s soon inspecting the disappearance of a local 19-year-old. The more Hooper digs, the more he finds that his new community conceals dark secrets. Read by Holly Sylvester. 15 broadcasts; begins Mon, March 8. – L, V

The House Swap, fiction by Rebecca Fleet, 2018. A couple takes part in a house swap – and signs of the wife’s past appear in the guest house. Read by Therese Murray. 11 broadcasts; begins Mon, March 29. – V

Off the Shelf*
Monday – Friday 8 p.m.

For Those Who Know the Ending, fiction by Malcolm Mackay, 2016. Two amateur thugs leave clues on a heist, and the mob sets out to learn who may have beaten them at their own game. Read by Neil Bright. 11 broadcasts; begins Mon, March 8. – L, V

There There, fiction by Tommy Orange, 2018. Twelve Native American travelers each has their own reason to attend the Big Oakland Powwow. Read by Bonita Sindelir. Nine broadcasts; begins Wed, March 24.

Potpourri*
Monday – Friday 9 p.m.

Why We Sleep, nonfiction by Matthew Walker, 2017. Sleep is vital to our lives, and we can harness its power. Read by Yelva Lynfield. 19 broadcasts; begins Thu, March 11.

Good Night Owl*
Monday – Friday 10 p.m.

The Magnificent Esme Wells, fiction by Adrienne Sharp, 2018. Young and irrepressible Esme Silver comes of age in the glamour days of Hollywood and the illicit days of Las Vegas. Read by Michelle Juntunen. 13 broadcasts; begins Thu, March 4. – L, S

Secret in Whitetail Lake, fiction by Christine Husom, 2015. An old car with human remains is found at the bottom of a Minnesota lake, on the same day the county sheriff goes missing. Read by Brenda Powell. 11 broadcasts; begins Tue, March 23. – V 

RTB After Hours*
Monday – Friday 11 p.m.

The Book of M, fiction by Peng Shepherd, 2018. An epidemic called the Forgetting emerges in India, and spreads across the world. Shadows disappear first, and then so do all their memories. Read by Mike Piscitelli. 20 broadcasts; begins Mon, March 8. – L, V

Weekend Program Books

Your Personal World, 1 p.m. Sat, presents The Gift of Years by Joan Chittister, read by Beverly Burchett.

Rated R, 11 p.m. Sat, presents Lamb by Christopher Moore (L), read by Scott McKinney.

For the Younger Set, 11 a.m. Sun, presents The Queen Bee and Me by Gillian McDunn, read by Pat Muir; followed by Flying by Carrie Jones, read by Stevie Ray.

Poetic Reflections, noon Sun, presents Scared Violent Like Horses by John McCarthy, read by Jack Rossmann.

The Great North, 4 p.m. Sun, presents Walking the Old Road by Staci Lola Drouillard, read by Robb Empson.

All times listed are Central Standard Time.

Abbreviations
V – violent content,
R – racial epithets
L – strong language,
G – gory descriptions,
S – sexual situation

Opportunities -- March 2021

Conferences

Attend AuSM conference

The Autism Society of Minnesota (AuSM) is holding a virtual conference, Inform, Influence, Innovate Together, April 21-24. It will feature dozens of livestream breakout sessions, virtual exhibit booths, an autism resources bookstore, and keynote speakers. Scholarship applications are available through the online registration form.

The full line-up of speakers and sessions, is available online. FFI: https://ausm.org/

Memberships

Join MNCCD

The Minnesota Consortium for Citizens with Disabilities (MNCCD) has introduced individual membership. MNCCD is a broad based coalition of advocates working to change public policy to create a more equitable society for people who have disabilities. MNCCD does this work by building awareness, providing education and engaging the community. Minnesotans who have disabilities, their family members, and allies can be individual members of MNCCD if they share its mission, vision, and values. People who already work with MNCCD through a member organization aren’t eligible for individual membership. Employees of an organization that would qualify for membership are generally not eligible for an individual membership. Additional details are included in the application form. FFI: https://www.mnccd.org/members.html

Children and families

PACER offers workshops

PACER Center offers many useful free or low-cost workshops and other resources for families of children with any disabilities. Workshops are online at this time. Advance registration is required for all workshops. At least 48 hours’ notice is needed for interpretation. Workshops are live-streamed. Check out PACER’s website and link to the newsletter of statewide workshops that allows participants to pick and choose sessions designed for their needs.

Taking Care of Yourself: A Workshop for Parents is 6:30-8:30 p.m. Tue, March 9, Join in a chat with other parents of children with special health care needs for a reminder of the importance of self-care.

Lunch and Learn: Sensory Supports for Children is noon-1 p.m. Tue, March 9. The workshop explores what “sensory processing” means and will demonstrate assistive technology to support children’s sensory needs when they become overwhelmed.

Educating Your Child with Mental Health Needs: Special Education is 6:30-8 p.m. Tue, March 16. Children with mental health needs may experience challenges with transitioning between multiple learning models, including in-person, and distance or hybrid learning. The workshop offers strategies for using the IEP to provide support.

Tech for Girls Club: Koding with Kodu is 10-11 a.m. Sat, March 20. Come learn how to code with Kodu, a visual programming language created by Microsoft. Middle school girls with disabilities will use their coding skills to create their own game! Kodu is designed to be accessible for children and enjoyable for anyone. Zoom access links for this workshop will be emailed to participants the week of the virtual meeting. FFI: PACER, 952-838-9000, 800-537-2237, pacer.org

Info & Assistance

Online mental health support

NAMI Minnesota (National Alliance on Mental Illness) offers a variety of free online peer support groups for adults and young adults living with a mental illness, their families, friends, spouses/partners, as well as parents of children and teens. Led by trained peer facilitators, the support groups help individuals and families learn coping skills and find strength through sharing their experiences. The groups are specifically for those individuals suggested by the group’s title. For example, Family Support Group is only for family members and NAMI Connection is only for those who live with a mental illness and are over 18 years old, etc. Find a complete listing of group meetings and how to join in by going to namimn.org and clicking on “Support Groups”. FFI:  https://namimn.org/support/nami-minnesota-support-groups/.

Centers for independent living statewide

Minnesota centers for independent living statewide have gone to a mix of operations during the COVID-19 pandemic. Typically centers offer an array of classes, training programs and other services tied to independent living. Centers that proving PCA, homemaker and other staffing for clients continue to do that in person. But most services aren’t provide at facilities. Facilities aren’t open to the public at all or on a limited basis, varying by center. Check with a local center before going in. FFI: www.macil.org/

Healthcare for heroes

NAMI Minnesota (National Alliance on Mental Illness) in collaboration with McCubbin Training and LeadingAge Minnesota has created a free, online training on Healthcare for Heroes – Self-Care Training for Senior Workers. The training helps caregivers develop personal strategies for managing stress and practicing self-care as they continue to provide care for others. It includes a salute from Gov. Walz, is targeted for caregivers to older adults living in care centers, assisted living homes, their own home, or adult foster care settings. It is about 20 minutes long and can be viewed on a smartphone, tablet or desktop computer. To access the training go to namimn.org and see Self-Care Training for Senior Workers. FFI:  651-645-2948.

Enjoy! March 2021

With Our Voices

The Arc Minnesota Gala, With Our Voices, is Sat, March 6. Join community leaders, volunteers, and friends for the gala, a free virtual celebration to raise funds that support people with intellectual and developmental disabilities and their families. Preregister. FFI: arcminnesota.org

Open Flow Forum

The Artists with Disabilities Alliance meets via Zoom 7-9 p.m. the first Thu of the month. Upcoming dates Thu, March 4 and April 1. Virtually join artists with disabilities and supporters to share visual art, writing, music, theater and artistic efforts or disability concerns. Facilitators are Tara Innmon, Kip Shane and Springboard for the Arts. The gatherings are fully accessible. Anyone needing special accommodations should contact Andy at host organization Springboard for the Arts. FFI: 651-294-0907, resources@springboardforthearts.org

Less to Enjoy!

Many of the museums, arts and theater groups that typically have listings in the Access Press Enjoy! calendar have suspended activities, moved to online services or are offering limited in-person services with social distancing and safety measures. Please check with a venue or organization before making plans. Check with theater groups to see what classes and performances are offered online. Theaters others are moving to more online activities. See what is available through the Minnesota Access Alliance and its calendar, at https://mnaccess.org/

Access Press - March 2021 Edition