Oakdale resident Jeffrey Toby has used wheelchairs since sustaining a spinal cord injury 37 years ago. His active lifestyle includes selfemployment, reading and getting out as much as possible. He also supports spinal cord injury research through the Fergus Falls-based Spinal Cord Society, hoping to help others in his situation.
Like many who use wheelchairs, Toby is susceptible to pressure sores. Pressure sores can all too easily expand into large wounds and become infected. In his case pressure sores recently worsened and led to infections that required hospitalization. A large pressure sore affected one of his femurs.
Toby said that treating pressure sores and infection was especially challenging during the COVID-19 pandemic.
“Initially I’m not sure I knew how sick I was.” He credits his wound care nurse, Jan Chevrette, for her expertise in getting him the care needed. He also gives credit to Tamarack.
Pressure injuries kill 60,000 people and affect up to 1/3 of wheelchair users each year, according to the U.S. Department of Health and Human Services.
Toby recently began using Tamarack Habilitation Technology’s FlexForm wheelchair cushion. “This cushion has been a life saver and a life changer.” A wound that was 10 inches long shrunk to the size of a sunflower seed.
So when Tamarack discontinued the cushion in late 2023, Toby was dismayed. “It’s just not right,” he said. “It’s so unjust. This is a product that can save lives.” While Tamarack is committed to serving existing FlexForm customers, prospective new customers will lose out.
Cole Carlson, owner and CEO of Tamarack, empathizes with the situation. Without a billing code from the federal Centers for Medicare and Medicaid Services (CMS), greater manufacture and sales of the cushion aren’t financially viable. His company has waged a lengthy fight to get the product recognized by CMS.
A CMS spokesperson responded to the issue, stating that under the Medicaid program, items like wheelchairs and their accessories are considered durable medical equipment (DME). Federal statute does not define DME for the purposes of Medicaid; however, medical supplies, equipment, and appliances are a mandatory home health care benefit when medically necessary. Under the Medicaid program, states have broad flexibility within federal parameters to define specific coverage policies for different types of DME.
Carlson has long maintained that innovation and product improvement
DEBATE To page 4
DSPs are honored Page 9
Housing issues eyed Page 4
Use Access Press Directory for needed supports, services Page 6-7
FedEx is focus Page 8
Election reminders! Page 3 Many people enjoyed the 2023 awards event. Join
The annual Access Press Awards event is coming up on Friday, November 1. Anyone wanting to purchase tickets needs to do soon as space is limited. Don’t miss the opportunity to reconnect with friends and to honor the winners and nominees for the 2024 Charlie Smith Founders Award and Tim Benjamin Sustainers Award. Check our website at www. accesspress.org to read biographies of the many worthy nominees.
This year’s event is designed for the mixand-mingle interaction that people enjoy most at the awards. Instead of a dinner, it will be an early evening reception with delicious bites and beverages.
The award ceremony will be emceed by Mark Daly, former Access Press board member and longtime investigative reporter at KARE-11.
The event is in the first floor Great Hall of the new Main Building, 700 7th St E, St. Paul, at Metropolitan State University. Ample parking is available across the street in the ramp and lot at 402 Maria Ave.
The fun starts with 4:30 p.m. registration. The awards program starts at 6 p.m. Tickets are $100 per person, or $800 per table of eight. Purchase tickets online at accesspress.org
Rise leader remembered Page 3
St. Paul council eyeing a ban on new drive-through services
New fast-food restaurant and coffee shop drive-through services would be banned in St. Paul if a Planning Commission recommendation wins City Council approval later this year. The commission voted 6-5 September 13 to recommend the zoning changes.
The changes could have major effects on the lives of people with disabilities, who sometimes rely on drive-through restaurants for their food.
Minneapolis banned new fast food and coffee drive-through services five years ago. A change would make the Twin Cities the first major U.S. metropolitan area to have such a ban.
Existing drive-through services of all types could remain open in place if the recommendations are adopted. If a fast-food restaurant or coffee shop closes, its drivethrough could still be used if a similar business opens in that location within a year.
New bank and pharmacy drive-throughs would be permitted, but at fewer locations than are allowed under current zoning regulations. Bill Dermody, city planning manager, said
that drive-throughs associated with food and beverage uses have more negative impacts on pedestrian-oriented development than those associated with banks or pharmacies.
St. Paul has more than 70 businesses with drive-throughs, with about half of those being fast-food restaurants and coffee shops.
The recommendation from the commission’s Comprehensive and Neighborhood Planning Committee is based on city staff studies and comments received at
ACCESS
a June public hearing. At the public hearing, organizations and community members weighed in on two ideas – allowing fewer new drive-throughs or a total ban on new ones. Supporters of a ban contend that changes are needed to promote walkability, improve pedestrian safety and decrease pollution from motor vehicles idling in line. Foes of the measure, including restaurant owners, DRIVE-THROUGH To page 4
EDITORIAL
Permanent absentee voting opens a very welcomed door for disabled voters
Years ago there was an issue at a St. Paul polling place. Someone was banging on a gymnasium door. The door was not the posted accessible entrance.
An election judge went to the door, opened it and discovered an angry voter. The voter upbraided the election judge, saying that she had always used that door and that there was no reason to make her go to another door. The election judge apologized and invited the voter to come in and vote.
The voter responded that she would need help with the steps leading from the door into the gym. That was why the door wasn’t in use for the election. It wasn’t accessible.
That story is told to remind us that things change and usually change for the better (whether some of us like it or not).
We Minnesotans with disabilities have seen a lot of positive changes when it comes to elections, voting and access. We hear less frequently about inaccessible polling places. But we still hear about an array of challenges to voting that our community faces.
We applaud Minnesota election officials and voting rights activists for such measures as ballot marking machines, early voting, curbside voting and the ability to seek help or bring a helper to the polls. We really appreciate the efforts to protect those under guardianship who are legally able to vote. Minnesota is a leader in access for all voters. Every one of us should be very proud of this work.
One welcome new change for those of us who may need to stay home and not go to the polls is permanent absentee voting. This began June 1.
We see this measure as part of the evolution of absentee voting. We had to give a reason to get an absentee ballot in the past. For people
We Minnesotans with disabilities have seen a lot of positive changes when it comes to elections, voting and access. We hear less frequently about inaccessible polling places. But we still hear about an array of challenges to voting that our community faces.
with disabilities, perhaps that meant disclosing a disability. Self-disclosure of disabilities is something that needs to be taken seriously and respected. Even to say “disability” on an absentee ballot request is something not everyone was comfortable with.
“No excuses” absentee voting was a welcome change in Minnesota when it was enacted a decade ago. But those of us who voted absentee still needed to seek an absentee ballot every time we needed one. That extra step is now gone.
Permanent absentee voting is a very needed measure for disabled Minnesotans. Voters can now sign up to be placed on a permanent absentee ballot list. A ballot will be sent to the
HISTORY NOTE
voter before every election. This eliminates the need to sign up time and time again for absentees ballots.
All eligible voters can choose to join the permanent absentee voter list by checking the box on the interactive voter registration application. Find the online and paper applications at mnvotes.gov/register.
Use of an absentee ballot allows a voter to vote by mail in the 46 days before an election. The ballot can be mailed back or dropped off at election offices.
Of course, absentee voting requires planning to make sure a ballot gets signed by another eligible voter, and then sent back to the proper election officials on time.
Those of us who live with disabilities have many reasons why absentee voting works for us. We may have chronic health conditions that keep us from going out in public every day. We may have compromised immune systems. We may be uncomfortable in crowds.
We may plan to vote in person on election day, but then find out that direct support staff or family members are not available to help us. Or we may legitimately worry about finding disability parking and being able to get to and from the polls. Presidential elections can be especially challenging with large crowds showing up to vote.
Voters can opt to leave the permanent absentee ballot list at any time. Just send a written request to local election officials. Also, be sure to make the change as part of a move of residences.
If a ballot cannot be delivered via mail, it is returned to election officials. A voter can be removed from the list if voting status is challenged or if the voter becomes inactive. Of course, voters who pass away are also removed from the list.
Minnesota has joined eight other states and Washington D.C. to allow all voters to join a permanent absentee/mail ballot list. Eleven additional states allow voters with permanent disabilities to join a permanent absentee/mail ballot list. But again, the latter effort again brings up the self-disclosure issue.
We know that when this measure was approved in Minnesota, it faced questions. But we have to believe that more access to voting is good.
Remember to vote for the candidates and ballot measures of your choice on or before November 5.
Medical device, disability accommodations regulations have long history
The October issue of Access Press includes an article about the difficulties device users and manufacturers face when seeking needed disability accommodations and ways to pay for those. So how did regulation of devices begin? Here’s some answers.
Before the federal government stepped in, people with disabilities didn’t have good options. Because little was known about disabilities, medical training and services weren’t available.
Dubious and dangerous devices were presented as “cures.” A look through late 19th and early 20th century newspaper ads shows the ridiculous promises made. The words “quack” and “fraud” seem too kind.
History centers on agencies with a lot of acronyms. The two main ones to remember are the FDA, for the Food and Drug Administration, and CMS, for the Centers for Medicare and Medicaid Services. Once a drug or a device has been vetted and is
ready for consumers, CMS must determine whether Medicare and Medicaid should cover and pay for it.
The FDA is the oldest comprehensive consumer protection agency in the United States, starting in 1906 when President Theodore Roosevelt signed the Pure Food and Drugs Act. Over time Congress expanded the FDA’s role in protecting and promoting the development of human and veterinary drugs, medical devices and radiationemitting products, human and animal food, and other projects.
In the 1960s and 1970s, Congress responded to public demand for more oversight over medical devices by passing medical device amendments to the Federal Food, Drug, and Cosmetic Act (FD&C). In 1982, FDA units that regulated medical devices and radiationemitting products formed the Center for Devices and Radiological Health.
In 1970, President Richard Nixon
established the Cooper Committee. Theodore Cooper, M.D., director of the National Heart and Lung Institute, led studies of needed medical device legislation. The committee recommended that any new legislation be specifically targeted to the devices because devices present different issues than drugs.
Amendments to the FD&C came in 1976 to provide assurance of the safety and effectiveness of medical devices. One key change here was to establish regulatory pathways for new medical devices and for patient studies of new devices. Added oversight gave the FDA the authority to ban devices.
The Bureau of Medical Devices and Diagnostic Products became the Bureau of Medical Devices the following year.
More changes came in 1990, with the Safe Medical Devices Act, providing more oversight and reporting on problems with medical devices. It also created the Humanitarian Use Device/Humanitarian Device Exemption
programs to encourage development of devices targeting rare diseases.
Many more regulatory and technical changes have been made since then to guide manufacturers and protect consumers. One of many changes to note was in 2016, with the 21st Century Cures Act. It mandated the creation or revision of policies and processes intended to speed patient access to new medical devices.
Consumers and manufacturers have faced frustration over regulations and inability to get needed devices. But it is also worth noting that there is still plenty of fraud out there that the federal government must be watchful of.
Learn more at https://www.fda.gov/aboutfda/fda-history
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 www.mnddc.org
EDITORIAL: Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed. We reserve the right to edit all submissions. Editorial material and advertising do not necessarily reflect the view of the editor/publisher of Access Press.
DEADLINE: 15th of each month.
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SUBSCRIPTION: Free and accessible to anyone in MInnesota, visit www.accesspress.org to subscribe. ABOUT ACCESS PRESS: A monthly newspaper published for persons with disabilities by Access Press, Ltd.
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Be ready and plan ahead for long lines, potential challenges when voting
Voting at the polls during early voting or on election day November 5? Planning ahead can make voting easier.
Allow enough time to vote. Presidential elections can have very long lines, even for early voting. Dress for the weather because long lines of voters can extend outside of the polling place.
Bring along any needed medications, a water bottle and a snack if one may be needed.
It’s Ok to bring a sample ballot as a guide. Make sure the sample ballot isn’t left behind after voting.
It’s OK to bring a helper to assist with voting, or to ask the polling place’s head election judge for assistance.
An eligible voter cannot be turned away from the polling place, yet voters with disabilities sometimes are unfairly challenged. If a challenge is raised, answer questions truthfully and indicate eligibility to voter. Voters who swear to tell the truth, answer the questions and sign the roster, must be allowed to vote.
Voters with disabilities, especially developmental disabilities or other disabilities that may affect their ability to communicate, may encounter these situations. Be prepared for such challenges.
Any eligible voter who encounters problems at the polls can call 1-866-OUR-
VOTE.
Lawyers are available to give voters with disabilities and other voters advice and help with voting problems.
One question that comes up is whether a person under guardianship or conservatorship may vote. The answer is almost always yes. Most people who are under guardianship or a conservatorship may vote.
A conservator or guardian is someone
Barrett was Rise Inc. leader
John Barrett is remembered as a leader who helped the disability service nonprofit Rise Inc. through a time of growth and change. Barrett died in August. He was 80 and lived in White Bear Lake.
Born in St. Paul, Barrett grew up in the West 7th neighborhood. He attended what is now University of St. Thomas, earning a bachelor’s degree there in 1965 and a master’s degree in 1977.
He began his career as a state employee, working as the business manager in the vocational rehabilitation department. He
then became the assistant director at the occupational training center in St. Paul.
In 1976 Barrett become the executive director of Rise Inc., a day training and rehabilitation center serving people with disabilities in finding employment and housing and helping them become contributing members of society as independently as possible. At the time he was hired, Rise provided services to 79 people. In his years at Rise Inc., Barrett assisted more than 15,000 Minnesotans. He led Rise during a period of growth,
appointed by the probate court to handle a person’s affairs. What’s the difference? A guardian takes care of a person’s personal affairs such as medical care, nutrition, clothing shelter, residence and safety.
A conservator manages a person’s financial affairs finances, property and real estate.
A person can have both a conservator and a guardian, and the conservator and the guardian may be the same person.
Guardians and conservators are subject to the control and direction of the court at all times and in all things. They can control many aspects of a person’s life. That control can raise red flags with elections and voting. A guardian or a conservator cannot tell a person how to vote. Nor can they deny a person the right to vote. Unless a person’s right to vote has been specially revoked by a court, being under guardianship or conservatorship does not prohibit a person from voting. Information on voting in Minnesota can be found at https://www.sos.state.mn.us/ elections-voting/
Learn about voting resources for voters with disabilities. The Minnesota Governor’s Council on Developmental Disabilities provides information on voter’s rights, in the form of a single-page sheet that outlines a voter’s legal rights, and which state and federal laws apply. Voters are encouraged to print out the sheet and take it with them to the polls.
Find it at https://mn.gov/mnddc/news/ newsitems/righttovote06.html . Print a copy and take it along when voting. Questions about voting can also be directed to REV UP, at (952) 920-0855. Check the organization’s Facebook page at https:// www.facebook.com/REVUPMN/
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helping to create a nonprofit organization that had a $28 million operating budget. Under his leadership, Rise grew to have 18 different locations, with more than 40 programs. More than 3,000 people were served each year.
Barrett also oversaw programming changes that served not only people with disabilities, but also people with a variety of different challenges including language and cultural barriers. His work won Rise national recognition.
He also used his avid interest in golf to
create an annual golfing fundraiser for the nonprofit.
Barrett and a group of lifelong friends enjoyed annual trips. He was very dedicated to his family, and was by wife Sandy’s side during a her 15-month battle with lung cancer. She preceded him in death. He is survived by his three children and their families, a sister, niece, nephew and many friends, Services have been held
mshosales@healthpartners.com
Accessible housing issues merit scrutiny in the face of housing shortages
Imagine being a person with a disability who uses a wheelchair and not being able to take a bath or shower, or reach the sink for most or entirety of your life because there wasn’t an accessible home available to you that could accommodate your needs. Or imagine becoming homeless and having to live in a hotel because there weren’t any accessible homes available. These aren’t hypothetical scenarios, but real-life accounts presented by Judy Moe who is the director of the Richfield Disability Advocacy Partnership. She, along with many other disability advocates are featured in a housing video series created by the Arc’s Minnesota Metro Regional Quality Council or MRQC.
The MRQC is one of four regional quality councils in the state of Minnesota and is made up of various community members, disability advocates, state and county representatives, and disability service providers within the metro area. Its goal is to improve the quality of life for people with disabilities, and one way the MRQC does this is by spearheading projects focused on highlighting issues and offering ideas for improvement.
One project in particular is a housing video series titled My Housing Story: Disability Community Members’ Housing Journeys in
Minnesota. It is a series of videos that highlight people with disabilities and their supporters as they make their housing journeys. The series addresses the many challenges they faced and the steps they took that lead them toward a home that fit their needs and wants. The entire video series can be viewed by going onto the MRQC Housing Workgroup website at https:// www.qualitycouncilmn.org/work-group/metrohousing-workgroup/
The MRQC created the video series to bring greater attention and awareness to the public about these challenges. The hope is that with greater awareness comes greater support toward the passing of policies that would expand housing options and services for people with disabilities, especially affordable and accessible housing.
One of the challenges the videos addresses is the difficulty in finding an accessible home. Many landlords don’t prioritize their accessible units to go to people with disabilities. By law, accessible housing and apartment units are supposed to be prioritized for people with disabilities. However, many landlords rent them out to anyone as soon as they become available. One recommendation the MRQC has is to potentially require landlords to hold accessible units for 30-60 days before renting
LETTER TO THE EDITOR
to someone without a disability and to do intentional outreach to find disabled tenants that can benefit from the accessibility features. Another challenge is the difficulty in finding a truly “accessible” home. Many homes labeled as accessible are not actually accessible. According to Moe, “The Americans with Disabilities Act requires hotels to have a certain number of accessible rooms with rollin showers.” However, Moe adds, “Currently, there is no universal requirement on a federal or state level that requires apartments to have a certain number of roll-in showers.”
The MRQC recommends a federal and state mandate that requires all “accessible” units to include roll-in showers.
A third challenge is finding good support service workers. According to Jillian Nelson who works at the Autism Society of Minnesota, “There is a shortage of home health and personal care workers.” Home health workers, personal care attendants (PCA), and direct support professionals (DSP) provide essential services that people with disabilities need in order to live and thrive. We desperately need to find ways to attract more workers so people with disabilities can continue to live and thrive.
Some new proposals have been introduced to attract and maintain workers, such as
Finding a pool for therapy, recovery is a struggle
I am writing about the difficulty disabled and injured people in need of water therapy have in finding pools that are used for recovery and therapeutics in Minneapolis. It is imperative for myself personally because I have been disabled 50-plus years, and pools help keep my legs functioning. Today there are fewer pools available for disabled, injured, and handicapped people that are used for therapy and exercise. I see this as a trend that needs a change of public policy.
I have had a medical handicap for over 20 years, which is one reason I use pools. Then this year on May 6, I was run over by a truck.
DRIVE-THROUGH
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the St. Paul Area Chamber of Commerce and Hospitality Minnesota, question whether the change will simply drive businesses and customers out of St. Paul.
The Mayor’s Advisory Committee for People with Disabilities also reviewed the proposal. But disability voices have been notably missing during the discussion.
The Planning Commission debated the committee recommendations for more than an hour September 13, with much discussion focused on technical zoning and site design issues. There were sharp disagreements on distance between new drive-throughs and residential properties, and whether fast-food and coffee shop drive-throughs could be a
DEBATE
From page 1
are often stymied by CMS coding and reimbursement processes. It’s difficult if not impossible for smaller businesses to bring to market unique, viable and effective medical equipment.
Carlson and Toby contend that without adequate cushions, wheelchair users can pay now or pay later with infections, costly medical bills, hospitalization and rehabilitation. He’d like federal officials to consider the overall cost savings the cushion could bring.
People who suffer from pressure sores find themselves stuck in bed, not being able to work, interact with family and friends, and be part of their communities. Carlson said those quality of life issues deserve consideration when medical devices can be made available through CMS.
The CMS coding process doesn’t allow for innovation and advancements in new products, Carlson said. “It can take years for a new code to be issued for a product.” Parts of the coding system are outdated, which is also a deterrent to manufacturers.
It is a situation that the Midwest Association for Medical Equipment Services & Supplies (MAMES) hears about all too often. MAMES is dedicated to providing members with educational, communication and networking opportunities available in the
I am struggling to get back to functioning at the level I was because of that accident. Having a pool available is important for this need is also important.
The situation I face and for others in Minneapolis face is:
*The YWCA on 11th and Nicollet in Minneapolis is being sold to St. David’s Center for Child and Family Development. The pool is shut down. They have prioritized preschools over pools.
The YWCA near me on East Lake Street has very cold water that is good for swimmers, but is bad for my recovery from my fractured
benefit in specific cases.
The distance between new drive-throughs and residential properties was amended by commissioners, from 120 feet to 60 feet. The distance requirement has swung from 60 to 120. Commissioners debated the drive-through noise impacts on residents versus how a longer distance requirements could restrict where future businesses locate.
That amendment met a mixed response, as did the notion of an outright ban of new fastfood and coffee shop drive-throughs.
The West 7th-Davern Starbucks at Sibley Plaza has a drive-through and occupies what was a gas station and large parking lot. Its building is close to West 7th, it has a patio and it has become an amenity for the Highland neighborhood, said Commissioner Nate Hood.
Noting large, empty retail parking lots
durable medical equipment and home medical equipment industry. Rose Schafhauser is MAMES executive director.
MAMES couldn’t comment specifically on the FlexForm cushion debate. But Schafhauser offered a general overview. For so many items, there aren’t specific Healthcare Common Procedure Coding System or HCPCS codes. “A common theme I hear from members is that they use the miscellaneous code - when there is no specific code available. The supplier does have to provide an invoice when it is billed so it is more labor intensive on the billing side and with coded or non-coded item or miscellaneous code - there is not a guarantee of coverage.”
Everyone agrees that a big issue in play is that of fraud prevention.
Each year in the United States, health care insurers process more than 5 billion claims for payment, according to CMS. For Medicare and other health insurance programs to ensure that these claims are processed in an orderly and consistent manner, standardized coding systems are used. The coding system is used to identify services and procedures for which they bill public or private health insurance programs.
Those involved with seeking codes for new products said the process is complicated. “Currently, CMS is releasing decisions on all coding actions on a quarterly basis and as an industry - some get through - others do not,” said Schafhauser. There is no formal review
pelvis. Plus they have lifeguard issues that cut their availability.
For more than 15 years I went to the Wasie Pool on Chicago Avenue in South Minneapolis. It was closed after COVID-19 and has not reopened. Instead its facility has been converted to a surgery center.
Like others, I do not have the money to travel distances to access a pool for my therapy and recovery.
NO more pools should be destroyed. Consideration for the therapeutic needs of many citizens should be taken into account.
More pools are needed. They should be
elsewhere in St. Paul, Hood questioned why those couldn’t be used for well-planned food and beverage drive-throughs. The ban “will essentially leave large parking lot parcels vacant.
But Commissioner Rich Holst, who chairs the Comprehensive and Neighborhood Planning Committee, reminded commissioners that the intent is to follow goals of the city’s 2040 Comprehensive Plan, which include making St. Paul a more walkable, pedestrian-friendly city.
The recommendations going to the City Council retained other issues studied by the commission committee and city staff.
Several technical recommendations were made for the City Council to consider including where new drive-through services could be located on buildings. Another
process and it can take many manufacturers and other parties working together to get a product approved. There’s also a need for proving medical necessity for a product, as well as clinical background work, per reviews and much more. “Unfortunately, it doesn't really appear that there is a mechanism for fighting the decision outside of reapplying and providing more information.”
Obstacles for getting a code for the FlexForm include the materials used in its manufacture and the process used to design the cushion. The
officially recognizing DSPs as a professional job similar to PCAs, and offering more benefits and increased wages. The MRQC recommends legislators pass laws that support such proposals.
All the recommendations mentioned not only benefit people with disabilities, but everyone. Many people, whether they identify as disabled or not, benefit from policies that make things more affordable and accessible, such as rent control, elevators, curb cuts, and the allowance of service and emotional support animals.
Passing policies to expand accessible housing and service means more people can stay in their own homes and partake in their local communities. This would promote inclusion, diversity and give people a sense of belonging and purpose. In addition, the need for more accessible housing rises as our elderly population grows every year. If we don’t take action soon, Moe foretells a bleaker future for housing than our current one. She said, “More people becoming homeless, more people living in institutional settings, more people trapped in abusive situations.”
The article was submitted by the Housing Workgroup of the Metro Regional Quality Council.
designed as multi-use, for swimming and therapeutic purposes. Minneapolis city planners should step in as best they can and encourage business and non-profits to fill the gap. So too should the Metropolitan Council. When organizations fill needs and make upgrades for other purposes they shouldn’t come at the expense of pools and the needs pools fill. A better option would be a way to fill both needs and not pit them against each other. Public policy makers need to understand this.
Joy Rindels/Hayden Minneapolis
recommendation is that a business with a drive-through offer service during the same hours that the drive-through is open, with a walkup window, ATM or service inside. The recommendations would not allow new drive-throughs downtown or in other business-zoned areas.
Drive-throughs would be a conditional use in the traditional neighborhoods 3 and 4 districts, with standards on the size of the building where the service would be allowed. New drive-throughs and their access points would be prohibited within 300 feet of a major transit station, i.e. light rail transit, bus rapid transit, arterial bus rapid transit or streetcar.
One impetus for Planning Commission action was problem drive-throughs at a couple of businesses in the city.
A version of this article appeared in
design allows for real-time seat adjustments, allowing pressure to be relieved in areas at risk for injury. Its design includes GlideWear, Tamarack’s low-friction, breathable fabric, on the seat cover. That is meant to counter friction and sheer, as well as heat and moisture that can affect wheelchair users.
Toby and Tamarack officials have taken their fight to U.S. Sen. Tina Smith and hope others join them. “This is so important,” Toby said. “This could save lives.
True Friends Camp Courage Recreation Center sees fundraising success
Through the support of many generous donors, more than $17.7 million has been raised to fund the True Friends Camp Courage Recreation Center in Maple Lake. The center will provide enhanced accessible amenities including a temperaturecontrolled, state-of-the-art pool with zero entry, as well as a spacious gymnasium with a stage to support sporting events, performing arts opportunities, and large group gatherings.
True Friends was awarded $10 million from the Minnesota Legislature and had launched a capital campaign to raise the remaining $6 million needed to fulfill project goals. Over the summer, True Friends exceeded that goal with the support of many donors and foundation grants.
“We are beyond thrilled to have exceeded our fundraising goals for the recreation center,” said John LeBlanc, president and CEO of True Friends. “The additional funds will help cover the cost of inflation since the initial campaign kick-off; all remaining funds will go toward additional amenities of the new building.”
Construction is slated to begin this winter. Site preparation began in September.
Visit www.truefriends.org/recreation-center to see a virtual walk-through of the new building and to keep up to date with construction timelines. True Friends is still seeking funds for additional amenities for the project.
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Here’s a look at our award nominees and the men for who the awards are named.
Charlie Smith was an innovator in the disability community. With his father William A. Smith, he founded Access Press in 1991. Founders, for purposes of the award nominations, are defined as people who created something that didn’t exist before and that benefits people with disabilities in Minnesota.
True Friends is a nonprofit agency providing life-changing experiences that enhance independence and self-esteem for children and adults with disabilities. True Friends’ programs include camp, respite, retreats, team building, therapy and adaptive riding, and travel. True Friends serves more than 25,000 people annually.
Camp Courage North is for sale Leadership at True Friends has decided to put Camp Courage North up for sale. The
decision was announced in September.
LeBlanc said that the sale decision was made after thoughtful consideration and review by the True Friend’s board. They looked at financial investments needed, staff changes and the long-term sustainability of the camp.
True Friends leaders hope that a new organization will come forward to continue the property’s legacy as a camp, and that the property in the future can thrive with the investment and attention it deserves.
“We are excited about the possibility of another non-profit carrying forward the legacy of Camp Courage North, and we remain committed to serving our community through our other locations,” he said in an announcement on the True Friends website.
The decision marks the end of an era for disability-focused camping. Earlier it was announced that programs and services at Camp Courage North were suspended for 2024.
Camps nationwide have struggled with costs and staffing issues, according to many news reports.
Camp Courage North opened in 1971 in
the Paul Bunyan State Forest in Lake George near Bemidji. The camp is about 100 acres in size, with four cabins and three different meeting spaces that can accommodate up to 125 people.
The camp was started by Courage Center, which established Camp Courage on Maple Lake in 1955.
Camp Friendship began in 1964. Camp Eden Wood was acquired by Friendship Ventures in 1995. That facility was established in 1925 as the Glen Lake Children’s Camp, originally serving as a summer haven for children with tuberculosis. In the late 1950s, the Arc of Hennepin County operated the site as Camp Indian Chief for people with developmental disabilities.
In 2005, Camp New Hope, near McGregor, merged into Friendship Ventures.
Friendship Ventures acquired Camp Courage’s camps in 2012, forming Camps of Courage and Friendship. That later became True Friends.
Nominees are: Larissa Beck, senior director of program services at Reach for Resources; Guild, Inc.; Paul Pranghofer, adapted sports pioneer; Valerie Shirley, Minnesota Deaf Muslim Community; and Debbie Tillman, Normandale Community College. EVENT
Tim Benjamin was a sustainer in the disability community. He led Access Press for 20 years, moving it forward and expanding
its voice and reach. He did this work during a period that saw the decline of print news in many sectors and many locations, helping Access Press overcome trends for print media.
Sustainers, for purposes of the award, are defined as people or organizations leading the way to foster the growth of programs or services that have benefited the disability community in Minnesota.
A new recreation center is planned.
One feature is a new gym.
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Disabled delivery driver, EEOC take action against FedEx
The Federal Express Corporation (FedEx), a global shipping and logistics company, violated federal law when it failed to provide reasonable accommodations for qualified, disabled ramp transport drivers with medical restrictions, and instead forced them to take unpaid leave or fired them, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed September 9. According to the EEOC’s lawsuit, since Nov. 29, 2019, FedEx maintained and enforced a 100 percent-healed policy against ramp transport drivers, who drive a tractortrailer and operate mechanical equipment to load and unload pallets or containers loaded with freight. When FedEx learned a ramp transport driver had medical restrictions, FedEx put the driver on a 90-day temporary light-duty assignment. At the end of that light-duty assignment, if the driver still had medical restrictions, FedEx would place the driver on unpaid medical leave that expired after one year unless the driver qualified for short- or long-term disability benefits. FedEx would not discuss reasonable accommodations with the driver that would have allowed them to keep working, such as getting assistance from other employees or using motorized equipment to help with moving freight. Instead, the EEOC said, FedEx kept them on unpaid leave until the drivers could prove they could work without
any restrictions or their leave expired, at which time they were terminated.
The initial complainant, who filed the charge that initiated EEOC’s investigation, was Wendy Gully. Gully was a ramp transport driver working out of a FedEx facility in Minneapolis. She had sustained injuries that limited her ability to lift.
FedEx placed her on temporary light duty, then unpaid medical leave, and ultimately fired her because she could not return to work without restrictions, even though she would have been able to perform her job with accommodations, the EEOC said.
Such alleged conduct violates the Americans with Disabilities Act (ADA), which prohibits discrimination against qualified individuals with disabilities, requires employers to provide reasonable accommodations that allow employees to do their jobs and prohibits employers from having policies that screen out qualified individuals with disabilities. The EEOC filed suit in U.S. District Court for the District of Minnesota after first attempting to reach a pre-litigation settlement through its administrative conciliation process. The EEOC seeks monetary relief for all the aggrieved individuals whom it identified through its investigation. The EEOC also seeks injunctive relief to prevent FedEx from discriminating against disabled employees in the future.
Two other employees with similar experiences are named in the lawsuit: Dawn Kerr of Las Vegas and Anthony Buckner of Kansas City, Mo. “100 percenthealed policies, like the one FedEx has, cost qualified workers their livelihood without giving them individual consideration,” said Gregory Gochanour, regional attorney of the EEOC’s Chicago District Office. “Under the ADA, employers have an obligation to
Minnesota autism therapy centers are accused of fraud, negligence
by Deena Winter, Minnesota Reformer
A former supervisor at a Minneapolis autism therapy provider called Smart Therapy Center made repeated attempts to report what she said were negligence and fraud to state officials.
The woman, who was granted anonymity because she fears retribution for speaking out, said she worked at the autism center for almost two years.
“Clients aren’t learning anything from this agency. This agency will do anything to keep clients from going to other centers to seek the additional assistance they require or need,” she wrote in an email to the state Department of Human Services (DHS)
The former Smart Therapy worker’s account offers clues as to why and how federal investigators are examining potential Medicaid fraud in the state autism program, as the Reformer first reported in June.
Minnesota doesn’t license autism centers, so there’s virtually no regulatory oversight. A federal investigation of a fraud-riddled federal child nutrition program unearthed connections to Minnesota autism centers, which have exploded in growth since 2018. The number of autism therapy providers increased 700 percent in the past five years, while payments to providers increased a whopping 3,000 percent.
Smart Therapy Center hires relatives or young people with no education or experience so they can pay them less and conceal their activities, the former worker said.
“I and other former employees witnessed some neglect regarding clients’ education needs and self-care. The clients’ goals aren’t being run by the behavioral therapist there,” she told DHS, which administers Minnesota’s version of Medicaid, known here as Medical Assistance, a federal-state health plan for poor and disabled
people.
Smart Therapy did not respond to a request for comment.
The state is investigating 15 autism providers, has already withheld payments to providers and forwarded five to Minnesota Attorney General Keith Ellison. Although the identities of the centers are unknown, an immigrant autism provider complained that DHS discriminates against minority providers.
The autism investigation comes close on the heels of the Feeding Our Future scandal, which is believed to be the biggest pandemic relief fraud in the nation and has underscored state government’s failure to stop program fraud in recent years.
The woman said that even months after contacting the DHS Office of Inspector General — which can halt payments and refer cases for prosecution — nobody followed up with her. Without licensing, DHS can’t track caseload size or staffing ratios. Last year, the legislature directed DHS to study whether to begin licensing autism centers and better regulate them.
Despite the rapid growth of the state autism program since launching in mid-2015, many children with autism spectrum disorder still aren’t receiving the services they need due to a shortage of providers, which illustrates the problem with widespread fraud in government programs — resources that should be supporting children in need are instead lining the pockets of scammers. Smart Therapy is still an active provider, according to DHS.
A DHS spokesperson said in a statement that all reports of suspected fraud or abuse are reviewed, but “due to the volume of reports received, the department only reaches out to people if more information is needed.” And
investigatory data is not public under state law, so the agency isn’t able to share updates about investigations until they’re resolved.
Smart Therapy formed in 2019 and quickly became one of the highest paid providers, reimbursed over a half million dollars by the state in 2020 — the 14th highest amount out of 85 fee-for-service providers that year. (Some Medicaid recipients get their insurance directly through the Minnesota Medicaid program, with providers billing DHS on a fee-for-service basis. Other people on Medicaid get services from private health insurance companies that the state contracts with — known as managed care organizations — for a fixed price per person.)
Smart Therapy was paid the ninth most out of 142 providers in 2021, when it was
explore reasonable accommodations and not to screen out qualified individuals with disabilities who can do their jobs.”
Amrith Aakre, the district director of the Chicago District Office of the EEOC, said, “The EEOC applauds the bravery of the original complainant in this case for coming forward, sharing her story, and helping the EEOC cast light on FedEx’s discriminatory policy.”
(Source: EEOC)
reimbursed $2.1 million. It was paid the third most out of 206 providers in 2022, at $2.8 million, and the seventh most out of 280 providers last year, when it was paid $2.6 million.
While Smart Therapy rocketed to the top quickly after opening, the autism center also got money from the federal child nutrition program that federal prosecutors say was rife with fraud during the pandemic.
Smart Therapy claimed it served over 199,400 meals and snacks in 2020 and 2021 under the sponsorship of Feeding Our Future — the nonprofit at the center of the federal fraud.
No one from Smart Therapy has been charged in the Feeding Our Future case.
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Minnesota's outstanding direct support professionals are honored
Direct support professionals or DSPs from around the state were honored by the Minnesota Organization for Habilitation and Rehabilitation (MOHR). The kudos are for exceptional service on behalf of people with disabilities and are given as part of National Direct Support Professional Recognition Week, September 8 – 14
“This year’s honorees go beyond the call of duty to support the people they serve,” said Robin Harkonen, president of MOHR. “We were deeply impressed with their accomplishments which range from designing programs to helping people with disabilities interact with active-duty military members, to improving medical outcomes for individuals they serve, to purchasing adaptive instruments and expanding access to music opportunities.”
“All four of this year’s honorees approach their work with passion, creativity, flexibility, and a high degree of selfmotivation that has allowed them to go above and beyond for people in their communities,” said Harkonen.
Travis Reinhart, WACOSA - Waite Park. Reinhart has worked extensively to provide community enrichment outings for the people with disabilities he works with. The outings include a program he developed called “Project Camp Ripley.”
After extensive research and time spent connecting with military workers from Camp Ripley, Reinhart was able to set up tours for everyone, allowing them to visit the base and pay tribute to military professionals. Over the past two years, he has planned four visits to Camp Ripley, each with 15 to 20 people per tour. Everyone has been able to learn about the origins of the United States military, the various military branches, and what it means to serve. These experiences give them an appreciation for all those who serve, as well as a better understanding of how the military represents this country.
William (Billy) Lackey , MSS –Eagan. Lackey has vastly expanded music opportunities for the people he serves at MSS. He has done this while pursuing a master's degree in music therapy.
Lackey researched and purchased adapted instruments and assistive technology, to enable independent participation for participants. He also created communication tools that fostered authentic engagement, worked with small groups, facilitated large jam sessions, and planned agency-wide, music-making events that brought people together. With a grant from the City of Eagan, he is coordinating a community music event at a local bandshell.
When not planning music events, Lackey meets monthly with people served by MSS. Together they develop an event schedule, filling it with programs, projects, and trips. He ensures this information is accessible to everyone by posting program plans daily in words and images, and by creating a daily recording of the information on a touchbutton speech generating device.
He also supports all trips in the community by creating checklists, packing bags, printing tickets and maps, and even fueling up the buses.
Rose Bispo, Cottonwood County DAC –
Windom. Bispo’s colleagues describe her as the ideal, person-centered DSP. She regularly goes above and beyond for the people she serves.
One example is the exercise group she helped start. Now more than 20 people exercise twice a week.
Another is her support for a deaf individual. Bispo learned to sign and is able to communicate well with him
A third example is of person she supports, who loves to shoot pool. Bispo got him a membership at a local senior center. Now he goes twice a month with two of his friends, who also have memberships.
Yet another individual she works with needed to lower his A1C. She helped keep him active, going on up to 7-mile bike rides and
doing strength training with him. Bispo truly loves the work she does and gives of herself every day.
Beth Wilke, Rise – Fridley. Wilke's work with Rise continually impacts both those she supports and the organizations with which she collaborates. She began her journey at Rise's Spring Lake Park location, supporting individuals receiving prevocational services. She excelled at connecting with people who had only worked in center-based settings, and her support prepared them for Rise's transition to community employment.
Wilke now supports a crew at Brooklyn Tool, Inc. in Fridley. She ensures that her team is never surprised by deadlines, and she helps them stay on top of deliverables.
She also makes time to celebrate their achievements and helps them understand how their jobs impact the overall business. Wilke is extremely person-centered and develops a strong rapport with each person she supports. She plans or creates experiences for everyone. She meets people where they are and prioritizes solutions over problems.
A notable example of Wilke’s dedication is when she began supporting a person who is deafblind and uses tactile American Sign Language (ASL). Wilke learned ASL and tactile ASL to better support this person. Beyond her direct support roles, she also serves as a mentor to new DSPs.
“It is thrilling to celebrate so many people that embody the spirit of service and dedicate their talents and lives to uplifting persons
Beth Wilke is shown with her award.
Rose Bispo and a client enjoy biking.
William (Billy) Lackey, left, is shown with a client.
Travis Reinhart, back row left, is shown with clients. MOHR
RADIO TALKING BOOK
For October, 21 new books will premiere Radio Talking Book is not just for listeners with visual disabilities. Anyone with difficulty reading or turning pages can enjoy the service.
The sampling published monthly in Access Press doesn’t represent the full array of programming. Listen to RTB’s live or archived programs online at www.mnssb.org/rtb, and learn more about programs.
Hear programming on a hand-held mobile device, for either iOS or Android. Visit the Apple App Store for iOS, or Google Play for Android, and download the Minnesota Radio Talking Book app.
Missed a book broadcast? Access it for one week following its original broadcast in the online weekly program archive.
For help accessing the archive, contact Ronnie Washington at 651-539-1424 or SSB. Equipment@state.mn.us.
If the book’s broadcast is no longer available in the archive, contact staff librarian Molly McGilp at 651.539.1422 or Molly. McGilp@state.mn.us
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 www.mnbtbl.org. Call 800-722-0550, MonFri, 9 am - 4 pm CST.
Updates are on the Facebook site Minnesota Radio Talking Book.
Audio information about the daily book listings is on the National Federation for the Blind Newsline. Register for NFB Newsline by calling 651-539-1424. The service provides access to more than 500 magazines and newspapers. Visit www.nfb.org/programsservices/nfb-newsline or call 612-562-7803
Staff welcomes any feedback or suggestions. Contact Joseph Papke at 651539-2316 or joseph.papke@state.mn.us Chautauqua*
Monday – Friday 6 a.m.
Of Boys and Men, nonfiction by Richard V. Reeves, 2022. An examination of why the modern male is struggling, why it matters and what to do about it. Read by Rick Seime. Eight broadcasts; begins Wed, Oct. 2. The Sullivanians, nonfiction by Alexander Stille, 2023. An intimate and engrossing look at the Sullivan Institute and its devolution
from psychoanalytic organization to insular, radical cult. Read by Carl Voss. 18 broadcasts; begins Mon, Oct. 14. – L, S
Bookworm*
Monday – Friday 12 p.m.
What You Are Looking For Is In the Library, fiction by Michiko Aoyama, 2023. A charming Japanese novel about how the perfect book recommendation can change a readers’ life. Read by Andrea Bell. Eight broadcasts; begins Mon, Oct. 7.
When the Whales Leave, fiction by Yuri Rytkheu, 2019. A vibrant retelling of the origin story of the Chukchi people and a timely parable about the destructive power of human ego. Read by John Schmidt. Four broadcasts; begins Thu, Oct. 17.
Jellyfish Have No Ears, fiction by Adèle Rosenfeld, 2024. A beguiling novel about a woman losing her hearing and an utterly original take on perception and selfperception. Read by Yelva Lynfield. Six broadcasts; begins Tue, Oct. 29.
The Writer’s Voice*
Monday – Friday 1 p.m.
A Hitch in Time, nonfiction by Christopher Hitchens, 2024. A well-selected anthology of essays from the incomparable writer. Read by John Potts. 11 broadcasts; begins Wed, Oct. 9. White House by the Sea, Nonfiction by Kate Storey, 2023. The intimate, multigenerational story of the Kennedy family as seen through their Hyannis Port compound on Cape Cod.
Read by Roger Sheldon. 14 broadcasts; begins Thu, Oct. 24. – L
Choice Reading*
Monday – Friday 2 p.m.
The Last Language, fiction by Jennifer duBois, 2023. A speech-language pathologist falls in love with a non-verbal patient and endures the fallout. Read by Bonnie Swenby. Seven broadcasts; begins Tue, Oct. 15. – L 2 a.m. in Little America, fiction by Ken Kalfus, 2022. A novel that imagines a future in which sweeping civil conflict has forced America’s young people to flee its borders, into an unwelcoming world. Read by Greg Olson. Six broadcasts; begins Thu, Oct. 24. – L
Afternoon Report*
Monday – Friday 4 p.m. Our Hidden Conversations
Michele Norris, 2024. A transformative dialogue on race and identity in America, begun by six-word micro-essay submissions. Read by Holly Sylvester. 19 broadcasts; begins Tue, Oct. 8.
Night Journey*
Monday –Friday 7 p.m.
The Body by the Sea, fiction by Jean-Luc Bannalec, 2023. In all of Commissaire Georges Dupin’s time living in Brittany, there has never been a murder on his home turf, until now. Read by Tom Speich. Nine broadcasts; begins Thu, Oct. 17.
Bright Young Women, fiction by Jessica Knoll, 2023. A breakneck thriller that follows two women on the pursuit of justice against all odds, while examining our culture’s obsession with serial killers and true crime. Read by Holland Richner. 15 broadcasts; begins Wed, Oct. 30. – L, S, V Off the Shelf*
Monday – Friday 8 p.m.
Loot, fiction by Tania James, 2023. A spellbinding historical novel set in the eighteenth century featuring a young artist coming of age and an exuberant heist. Read by Carol McPherson. 11 broadcasts; begins Mon, Oct. 14.
Brooklyn Crime Novel, fiction by Jonathan Letham, 2023. A sweeping story of community, crime, and gentrification, tracing more than 50 years of life in one Brooklyn neighborhood. Read by Don Lee. 14 broadcasts; begins Tue, Oct. 29. – L, S, V Potpourri*
Monday – Friday 9 p.m.
Impermanence, nonfiction by Sue Leaf, 2023. A personal journey through the everchanging natural and cultural history of Lake Superior’s south shore. Read by Jeffrey Weihe. 10 broadcasts; begins Mon, Oct. 14.
The Worlds of Sherlock Holmes, nonfiction by Andrew Lycett, 2023. A deep dive into the contemporary world of Holmes – tracing the infamous character’s own interests, personality, and mythologized
All times listed are Central Standard Time. Abbreviations V – violent content R
racial epithets L – strong language S –sexual situation G – gory descriptions
Particularly when our protagonist discovers who's running the place. Read by Stuart Holland. 10 broadcasts; begins Mon, Oct. 7. – L
Holly, fiction by Stephen King, 2023. One of King’s most compelling characters returns in this chilling novel to solve the gruesome truth behind multiple disappearances in a midwestern town. Read by Cintra Godfrey. 19 broadcasts; begins Mon, Oct. 21. – L, S, G, R RTB After Hours*
Monday – Friday 11 p.m.
Freefalling (rebroadcast), fiction by Eme McAnam, 2023. An elderly hotel owner struggling with dementia finds love later in life. Read by Andrea Bell. Nine broadcasts; begins Mon, Oct. 7. – S Bride, fiction by Ali Hazelwood, 2024. A dangerous alliance between a Vampyre bride and an Alpha Werewolf becomes a love deep enough for readers to sink their teeth into in this new paranormal romance. Read by Holland Richner. 14 broadcasts; begins Mon, Oct. 21. – L, S
Weekend Program Books
Your Personal World, 1 p.m. Sat, presents The Good Enough Job by Simone Stolzoff, read by Yelva Lynfield; followed by Anatomy of a Breakthrough by Adam Alter, read by Cintra Godfrey.
For the Younger Set, 11 a.m. Sun, presents Silent Unseen by Amanda McCrina, read by John Gunter. – L
Poetic Reflections, noon Sun, presents Circle Back by Adam Clay, read by Carl Voss; followed by Bright Dead Things by Ada Limón, read by Mary Beth Redmond. – L, S , presents Tales by Patrick
TAKE NOTE!
2024 Autistic Community Summit
Registration is now open. The summit on Sat, Nov. 9 at Woodlake Lutheran Church, 2120 W 76th St, Richfield. The cost is $35 for a day full of speakers and workshops. The highlight is a keynote address. Scholarships are available. The event is held both in-person and virtually. It is organized by the Autism Society of Minnesota. Created and curated by people with autism and for people with autism, the
From page 8
The child nutrition program — funded by the U.S. Department of Agriculture and administered by the Minnesota Department of Education — was designed to feed hungry children as schools and child care centers shuttered. But prosecutors have said very few meals were actually given away; instead, fraudsters filed phony invoices and fake rosters of children to steal over $250 million. Seventy people have been charged so far, and 23 have been convicted while dozens more await trial.
Smart Therapy was reimbursed over $465,000 for the child nutrition program in 2020-2021, and over $85,000 in 2019, when it was reimbursed for nearly 41,000 meals and snacks under the sponsorship of Partners in Nutrition, the other nonprofit enmeshed in the federal case.
DHS Inspector General Kulani Moti said in a statement that fraud is unacceptable, and DHS set up programs to prevent it as often as possible. She said some of the people with connections to Feeding Our Future have been disqualified from working in a DHS-funded provider organization for 15 years.
“Some of the individuals were controlling individuals in the provider organizations and we revoked the licenses and stopped payments,” she said, without providing specifics.
But to the former Smart Therapy employee, DHS is failing to do even the basics.
“No one has contacted me,” she said about a month after the Reformer forwarded her concerns to the OIG at her request.
An early childhood special education public teacher said she and colleagues have been concerned about questionable practices at some Minnesota autism centers. “These are popping up and it’s super shady. … This year they’re coming out of the woodwork.”
The source, who was granted anonymity because she was not authorized to speak by her employer, does initial evaluations of children up to age 5, and talks to parents about any concerns. Some 3- to 5-year-old children attend her school’s half-day program and then get bused to autism centers.
She said some operators of those autism centers are unhappy that the school has children for half of the day, e.g., taking their clients.
“There’s been a lot — particularly this year — of families opting out of early childhood special ed options because they don’t want to lose their programming with this autism center,” said the employee.
Families she worked with said they were told by autism providers to continue with autism center programming rather than starting school, which has specialized programming for ages 3 to 5.
Often immigrant families have little understanding of the autism center’s purpose, she said. Some parents have never heard of autism, even though their children are in an autism center. Some think their children are going to regular child care, when actually they’re going to an autism center. One father told her the autism center offered “free child care.” His daughter was diagnosed with a speech delay, not autism.
The teacher made it her mission to get inside
KENT’S ACCOUNTING SERVICE, LLC
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Fax: 952-472-1458
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purpose of the Autistic Community Summit is to provide a space for community building and sharing the knowledge and perspectives of Minnesota’s autistic community. The theme is “Service, Connection, and Change in the Autism Community.”
The longtime Opportunities and Enjoy! calendars are now Take Note! Access Press is listing fewer calendar items in print and encouraging more to be posted online. The change allows more immediate information about upcoming events.
Online options include our free events calendar. Ways to post an event can be found at www.accesspress.org, under the listings tab. The event must be disability-focused, offer accommodations or led by a disability
some of the autism centers to see what they were like, and said she got into five last year. Some of the centers were located in “crazy business parks,” she said.
“It’s like somebody had taken a business office and gotten rid of everything,” she said.
Often she found a lot of young staff members — many glued to their phones — and few children. Not one had a speech clinician on site. There were few toys or core boards, visuals or other learning or therapy materials. Sometimes, she said, the employees seemed to be putting on a show for their visitors.
“Some were absolutely horrific,” she said. Some were using a decades-old, nowcontroversial intensive, one-on-one treatment called applied behavior analysis, or ABA, but she said it was poorly done: She saw one behavior technician instruct a child to “sit,” “stay,” and “spin.”
“It was terrible,” she said.
Meanwhile, the parents rarely get past the waiting room — if they get there at all, since many children are transported alone in taxi cabs or vans, free of charge — to see what’s happening, she said.
Somali ‘autism moms’ call for more training
A 2009 Minnesota Department of Health study found the proportion of 3- to 4-year-old Somali children receiving autism services was as much as seven times higher than non-Somali children. More recent data show the disparity has only grown.
The prevalence of autism is significantly higher among Somali 4-year-olds, at 1 in 16, compared to the overall Minnesota rate of 1 in 53, according to Jennifer Hall-Lande, investigator with the Minnesota Autism and Developmental Disabilities Monitoring Network, which is funded by CDC to research the number of children with autism in
Hennepin, Anoka and Ramsey counties.
The rate among 8-year-old Somali children is comparable to all Minnesota children — 1 in 34 children — which is slightly higher than the average among 11 states tracked by the Centers for Disease Control and Prevention.
Hall-Lande said the data can’t explain why the prevalence is so high among Somali 4-yearolds. Anecdotally, Hall-Lande said, there could be greater awareness of autism in some communities, resulting in earlier referral and identification. Some children may be served under a different eligibility category at older ages, or some older children may leave the public schools and go to charter schools, she said.
In the wake of news that autism centers are under federal scrutiny, a group of self-described “autism moms” say more training is needed for providers serving the many Somali-descended children on the spectrum.
Idil Abdull is a Somali-American immigrant whose son has autism, which led her to advocacy. She opened an autism therapy agency and co-founded the Somali American Autism Foundation of Minnesota.
She and other Somali parents of children with autism fought for years to get the state Medicaid program to pay for applied behavior analysis for low-income children on managed care plans. ABA focuses on changing behaviors and takes more hours of repetitive therapy, and thus higher reimbursement.
Abdull said before immigrant providers entered the field, white providers bullied and discriminated against parents of children of color. Minority providers saw the need to provide autism services beyond the 9-to-5 workday and stepped in to provide evening and weekend hours, she said.
She said DHS needs to do a better job of educating some communities about autism,
service organization. Anyone with questions can contact Editor Jane McClure at jane@ accesspress.org or 651-644-2133 ext. 1
Another option is to consider an online ad to get the word out. A third, ongoing option for an interested business or disability service organization is to sponsor our online calendar, being a sponsor is a great way to support Minnesota’s disability community and its events. Information can be obtained by emailing ads@accesspress.org
and the rules and regulations governing autism centers, to help them succeed.
“When a minority agency sneezes the wrong way, DHS has a meltdown, but when a nonminority agency does something wrong, they don’t even blink,” Abdull said. “We worked too long and too hard since 2007 for our children in Minnesota and nationwide to let anyone, including DHS, dismiss our pain and challenges.”
Fatima Molas, co-founder of the Multicultural Autism Action Network, said Somali parents met a few times with a DHS autism official to give ideas for how to help the community, but there was no follow through.
Molas and other Somali autism moms called on DHS to provide culturally appropriate training to minority providers. Molas said before more immigrant providers entered the market, families were wait-listed and would never get a phone call from autism centers. Newer providers that better represent diverse communities are more flexible, offering services beyond the traditional 9-5 work day, some of them advertising that they’re open seven days a week.
The number of providers who diagnose and treat autism has increased from 41 providers in 2018 to 328 last year. The amount paid to providers during that time climbed from about $6 million to nearly $192 million.
The Autism Treatment Association of Minnesota says the rapid increase in the number of providers and payments correlates with the launching of the state program in 2018. But the group has advocated for stronger licensure and oversight of service providers, supporting a bill — passed last session — requiring people who practice applied behavior analysis and use the title of behavior analyst to be licensed by the Minnesota Board of Psychology.
Abdull opposed licensing behavior analysts but supports licensing autism centers, because, she said, “These are vulnerable kids; they can’t speak for themselves.”
Eric Larsson, executive director of clinical services for Lovaas Institute Midwest, which provides autism services to children in their homes and community, serves on a national certification board that responded to 2018 fraud allegations in Florida by setting up a special unit to process the complaints. That state found therapy providers billing for more than 24 hours in a day, billing for 31 consecutive days, and falsifying qualifications.
Larsson used to think Minnesota had too many bureaucratic hurdles. But he said without the safeguard of licensing, the same type of fraud could happen here.
Read the entire article and other stories about fraud at https://minnesotareformer.com/
This story is reprinted through Minnesota Reformer’s Creative Commons agreement.
Team MAAN (Multicultral Autism Action Network) at a recent peer-to-peer exchange MAAN
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