Volume 34, Number 5
All eyes are on the May 22 session end date
May 22 is the final day of the 2023 Minnesota Legislature’s regular session. The push is on to reach agreement on omnibus bills and spending, and to get work done on time.
Many disability advocacy groups and individuals are putting in long hours, tracking bills and floor sessions. The biggest rallies for Minnesotans with disabilities are in the books for 2023. Committee testimony has largely wrapped up so the focus is on shepherding measures through.
Looming over everything is the state’s record surplus of $17.5 billion. The budget targets agreed on earlier this spring by Gov. Tim Walz and DFL leaders come in at almost $17.9 billion. In Minnesota’s disability community there have been many calls to use that surplus to address pent-up needs, including addressing the care crisis.
Several measures have already been signed into law. But many disabilityfocused measures are still in the mix. With hundreds of disability-related bills introduced this session, it’s inevitable that not everything will pass. While it is encouraging to see so many long-term issues considered, tracking everything has been a challenge with so much in play.
The crush of bills has also led to questions about the accuracy of some fiscal notes and even the lack of fiscal notes in a few cases. Fiscal notes are important because they inform elected officials of the financial impact that proposed legislation would have for state government. A fiscal note outlines costs, potential savings, and increases and decreases in revenues.
As Access Press went to press, many omnibus bills had passed the House and Senate, and had gone to conference committees. Conference committees are temporary groups, where members of the House and Senate work to resolve differences between their bills. Five House members and five Senate members are appointed to each conference committee. Knowing who the conferees are is crucial on every issue, including those disability community members follow.
Some smaller bills are still moving ahead outside of the larger omnibus processes. The situation with legislation is quite fluid so the best advice is to check disability advocacy service organization blogs and bill trackers on a regular basis. Some Twin Cities television stations offer bill trackers as well.
Another issue to keep in mind is that this is a budget session and that can add to the complexity of conference committees. Larger bills on jobs and economic development, health and human services, education, housing, public safety are key issues to follow. Keep in mind that smaller issues get wrapped up in those bills so take the time to look at bills carefully.
Several issues have been highprofile this session including abortion, marijuana and paid family medical leave. The leave proposal has had many hearings. The measure proposed would partially replace up to 12 weeks of wages in a year’s time to care for a sick family member or new child.
2023 Disability Services Day highlighted waivers, wages
Minnesota’s historic state surplus has renewed calls for legislators and Gov. Tim Walz to invest the state’s care system for people with disabilities. The 2023 Disability Services Day at the Capitol drew advocates and allies from around the state, with the rallying cry of “Invest in us.”
Doing more to increase and sustain
disability waiver services was a key focus for those at the rally and lobby day, which was organized by the umbrella groups ARRM and MOHR. Thousands of people from around Minnesota attended the event, filling the capitol rotunda and its balconies. They waved
RALLY To page 3
Deaf, deafblind and hard of hearing awards given Page 7
Guardianship needs scrutiny Page 2
Legislation generates letters Page 4 Tracking worker shortage Page 8
Long COVID is focus Page 4
Hearing to outline proposed life choices settlement
by Jane McClure
A federal class action lawsuit involving Minnesotans with disabilities who live or have lived in corporate adult foster care or group homes returns to U.S. District Court in St. Paul on Friday, May 12.
Before the 1 p.m. court proceedings, disability rights activists will gather at 11:30 a.m. to protest what they see as an inadequate proposed settlement. The “Integration Now” rally is meant to draw attention to the settlement, and the need for more to be done to help Minnesotans with disabilities as they seek to integrate into their home communities.
Learn more about the rally at the Facebook group, Minnesotans for Direct Support Improvements or at okerlundlaw. com. The law firm is representing those who object to the settlement. There is also an online petition demanding that the proceedings be virtual so that more can watch.
The May 12 proceeding is a fairness hearing. A fairness hearing is one where the court weighs a decision as to whether or not a settlement agreement is fair, reasonable and adequate. The final decision can be made at or after the hearing.
The hearing on Murphy versus Harpstead was to be held in January but was postponed to allow the Minnesota Department of Human Services (DHS)
more time to mail notices to some Minnesotans with disabilities who were entitled to receive notice of the settlement agreement.
Objections to the settlement were filed in March.
The civil court case has gone on for more than six years. Tenner Murphy is the Murphy in the case and is one of the lead plaintiffs. Other named plaintiffs are Marrie Bottelson and Dionne Swanson.
Harpstead is DHS Commissioner Jodi Harpstead. DHS itself is a defendant, and several counties’ human services departments and ARRM are involved as interested or amicus parties. The Minnesota Disability Law Center is representing the plaintiffs.
A key factor in the case is the federal Olmstead decision. Olmstead versus L.C. is considered one of the most important
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SESSION To page 9
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It takes energy to participate in a disability rights rally.
Community living options are at the heart of the court case.
Guardianship fight shines a bright spotlight on system's problems
Many of us who live with disabilities spend a lot of time looking over our shoulders. We may be living independently or with services and supports. We may work, volunteer and have a circle of friends.
But we know that things can change quickly, especially for those of us who rely on staff to help with our personal care and daily living needs. The ongoing staffing crisis is a constant reminder of that. Looking at the blank lines on one’s schedule is cause for anxiety.
An illness. A home accident and injury. The loss of most of a care provider team. Any or a combination of these can upend a person’s life. The loss of one’s home and a forced move into a care facility is an experience too many of us have faced.
So, too, is the prospect of being placed under guardianship and having that guardianship mismanaged.
Minnesota has long had a system in place for appointing guardians for people deemed unable to take care of themselves. While this system has undoubtedly aided many, it has been criticized as an insensitive and at times overbearing approach for people with disabilities.
Guardians are appointed by judges, and are supposed to protect the best interests of those they serve. Guardians can have very broad authority over their charges’ lives, making choices about medical care, housing and even personal relationships.
Placing a person under guardianship may be well-intentioned. But judges may lack information about a person’s life situation. Judges all too often may assume that people with disabilities lack the wherewithal to make major life decisions. Judges may not consider someone’s personal history or unique
More and more people are being placed under guardianship. State statistics show that as of last year, 33,645 Minnesotans were being supervised by court-appointed guardians. That number is up by about 50 percent since 2019. Has the 2020 legislation had the opposite effect? Or is this a reflection of an aging population?
Questions about guardianship promoted Minnesota lawmakers to make changes to state law in 2020. The intent was to limit use, directing courts to only appoint guardians if less onerous options had been tried and failed. The changes also promoted the “supported decision making” process, which is meant to help guide key life decisions. But if these measures aren’t enforced adequately, then what?
More and more people are being placed under guardianship. State statistics show that as of last year, 33,645 Minnesotans were being supervised by courtappointed guardians. That number is up by about 50 percent since 2019. Has the 2020 legislation had the opposite effect? Or is this a reflection of an aging
Cindy Hagen’s case put a bright spotlight on the issues of guardianship. Hagen, 49, is quadriplegic as a result of a childhood motor vehicle accident. Many of us have followed the southern Minnesota woman’s long fight to reclaim some measure of independence, end a long hospital stay and live in the community again.
Hagen has lived with help from caregivers for a long time. She was hospitalized but unable to go home even though she was healthy enough to do so. The shortage of caregivers left her life in limbo.
At one point, Hagen told a reporter, "There is absolutely nothing wrong with my mind. I don't need a guardian. I just want to go home."
But like so many of us, Hagen got caught in the dire caregiver shortage. With no say, a Blue Earth County judge put Hagen under the guardianship of a firm she’d never heard. Hagen had to hire an attorney to contest the guardianship order.
Hagen didn’t want to live in a skilled nursing home – she wanted her own home. She just wanted what she’d had for a long time. Blue Earth County officials interpreted that as Hagen having "impaired decision-making" and "lacking sufficient understanding of the reality of her situation."
Minnesota may be relying on guardianship too much and not doing enough to address our care crisis. This isn’t what the 2020 state law changes, the state Olmstead Plan for community integration, and many other measures are meant for.
This is what really angers and worries us. Of course it’s easier to appoint a guardian. There are great guardians who are fierce watchdogs for their clients. There are others who steal and don’t look out for any interests but their own.
What is happening to our legal rights to live in our home communities?
What happened to having a say in life decisions? The message the Hagen case sends is this: If we’re not good little disabled people who sit in a corner and don't get to have a say, does that mean that our ability to make decisions is impaired? If we disagree, do we lack understanding of our situation?
The ripples of the care crisis are catching too many of us in their wake. State lawmakers need to fix this.
Minnesota Council on Disability marks 50 years of advocacy, service in 2023
Light 50 candles and sing “Happy Birthday” to the Minnesota Council on Disability (MCD). The council is celebrating its founding in 1973. Countless staff members, volunteer council members and allies have worked under the council’s umbrella on a myriad of issues over the past five decades.
MCD advises the governor, state lawmakers, state agencies and local units of government on issues affecting Minnesotans with disabilities. One place where the council has a strong presence is at the state capitol, where staff and council members put in many hours advocating on various bills that affect Minnesotans with disabilities. Much time is also put in analyzing the impacts of proposed legislation.
The council was one of many initiatives that came out of the groundbreaking 1972 Governor’s Conference on the Handicapped, which was championed by then-Gov. Wendell Anderson.
Disability advocacy groups across the state supported legislation creating the Minnesota Commission for the Handicapped in 1973. Many were eager for state officials to take the next steps in the disability civil rights movement.
The new commission was eyed as a replacement for two groups, the Minnesota Governor’s Commission on Employment for Handicapped Persons and the Minnesota Advisory Board on Handicapped, Gifted and Exceptional Children. Separate councils focused on employment and children’s issues were under the umbrella of the new commission.
The commission was seen as providing two primary services – advocacy and information. Anderson appointed the first 30-person group. “Its purposes are to act as an advocate for physically, mentally, emotionally and behaviorally challenged persons to coordinate the delivery of services to the handicapped, to advise
the governor and legislature as to needed services or delivery systems, and to provide information to the public at large regarding the needs and potential of handicapped persons,” an early press release stated.
DFL labor leader Cliff Miller was the commission’s first executive director. His assistant, Dick Ramberg, succeeded him five years later. They worked in a tiny office at Metro Square in downtown St. Paul.
John Myers, who then led the HoernerWaldorf (now RockTenn) paper milling plant in St. Paul, was the first board chair.
One of the commission’s first big efforts was study of the state’s special education system, conducted with the Minnesota Department of Education. The study, which had a cost of $50,000, was to scrutinize all laws and executive and judicial opinions regarding special education, the level of compliance and noncompliance in Minnesota, and what methods should be undertaken to ensure that students in special education received
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Other efforts followed, ranging from employment to access issues of all types. The commission’s work often mirrored what happened at the federal level, including the 1973 federal Rehabilitation Act and of course, the 1990 Americans with Disabilities Act (ADA).
Name changes are part of the MCD history, as it also has been known as the Council for the Handicapped, Minnesota State Council on Disability and now the Council on Disability. The council itself also changed, going to 21 members in 1983 and 17 in 2013.
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
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May 2023 Volume 34, Number 5 Pg 2
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Learn about 'long COVID' and be aware of many available resources
The Minnesota Department of Health (MDH) is extending its long COVID work in 2023 with the aim to increase knowledge, awareness and resources for the condition among the public and providers. The agency has teamed up with Stratis Health and consultants from the former Institute for Clinical Systems Improvement (ICSI) to form a network of 20 primary care providers and specialists who are treating long COVID patients from across the state of Minnesota.
Facilitated by MDH’s long COVID team, a network of 20 clinicians is known as the Long COVID Guiding Council. Its members represent a diverse array of medical settings including community clinics, safety net hospitals, long COVID specialty centers, rural health systems and academic health centers. The focus of the Guiding Council will be to develop strategies to educate providers and help them implement processes and policies that will improve access and quality of long COVID care.
There is still much that is unknown about long COVID. To address this, the Guiding Council meets monthly to discuss emerging evidence, treatment and current practices. In developing guidance, they will incorporate broader stakeholder input from patients, caregivers, nurses, community health workers and community leaders.
“Clinicians are telling us that there is very little communication among the care providers who see long COVID patients in Minnesota and that a coordinated learning network would increase access to care and the quality of care that is provided,” said Dr. Ruth Lynfield, state epidemiologist and medical director at MDH. “We still have a lot to learn about long COVID. But laying the groundwork to expand awareness about the emerging evidence and the available treatments is an important first step toward improving outcomes for those suffering from the impacts of long COVID.”
The effects of COVID-19 can vary greatly, from cold and flu-like symptoms to life-threatening complications. Recovery can be similarly complicated. Not everyone who contracts COVID-19
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organizational banners and homemade signs, asking legislators to “See us.”
Another message rally participants held up was, “If not you, then WHO? If not now, then WHEN?”
The organizations and their members have again joined forces with the Best Life Alliance, which is a statewide coalition of more than 130 organizations, people with disabilities, families and supporters advocating for Home and Community-Based Services changes and additional funding.
The rally was the first in-person Disability Services Day in three years. Those who attended the rally heard from organization leaders as well as state
makes a fast or full recovery. Tens of thousands of Minnesotans face ongoing or new symptoms such as shortness of breath, extreme fatigue, headaches, dizziness, brain fog and more. This is known as long COVID, and even mild infections or reinfections can lead to symptoms that may last for months or years.
Long COVID can be as unpredictable as it is debilitating. Although it’s more common in adults, teens and children can be affected. Some people with long COVID struggle with work, school, family life, education and daily tasks. This impacts their financial stability, quality of life and mental health.
Long COVID can be disabling and can cause health complications for people with disabilities.
Annette, who is in her mid-30s and was previously healthy, has been disabled from long COVID for nearly three years. She said that if it were not for her savings, she would have ended up homeless after losing her job and facing mounting medical costs. Her savings are now depleted. “It’s expensive to be this sick,” she said.
Steve, a 70-year-old retired law
lawmakers, Gov. Tim Walz and Lt. Gov. Peggy Flanagan.
Walz noted that with DFL majorities in the House and Senate, “Things are different this year. Things that have stalled before are moving.” He and Flanagan said they committed to seeing caregiver pay increase.
Raising wages for direct support professionals (DSPs) is seen as the only way to address the workforce crisis in waiver-funded disability services. Countless disabled Minnesotans have struggled to stay in their homes and maintain jobs and community ties in the face of the dire workforce shortage.
A competitive labor situation means that workers who would otherwise take personal care jobs can earn more at fast food restaurants and other workplaces.
enforcement officer from Glencoe, has struggled with long COVID since 2020. “Prior to COVID-19, I was in good health. I used to walk across my 10-acre hobby farm from one corner to the other,” he recalls. “Now, because of problems with my balance, breathing and heart, I need to take the tractor. It has changed my lifestyle, my medical needs and my mobility.”
With appropriate medical care, many people can manage their symptoms and improve their health and quality of life. Unfortunately, all too often, Minnesotans experiencing lasting symptoms after a COVID-19 infection do not recognize they are experiencing long COVID. Additionally, treating long COVID can require specialists and ongoing follow up that is not always accessible, especially for those already experiencing health inequities and barriers to care.
“Making sure we prevent disparities in access to diagnosis, treatment and supports for long COVID is critical,” said Dr. Nathan Chomilo, medical director for Medicaid and MinnesotaCare at the Minnesota Department of Human Services, and Guiding Council member. “For Minnesotans served by our Medicaid
It’s not known how many people have died due to inadequate personal care.
The big takeaway for those at the rally was to keep raising their needs and to continue to lobby for changes. Rep. Peter Fischer (DFL-Maplewood) was among state lawmakers who emphasized the severity of the wage and workforce situation. He urged those present to share their stories with legislator, ad to urge more pay for those who do “very important work.”
Other speakers urged the group to channel their passion into advocacy and to demand that the state support high quality care. With a surplus, this is the year to get something done, they said.
Senators John Hoffman (DFLChamplin) and Jim Abeler (R-Anoka) told the crowd that they are working to provide more funding for waiver services and other disability issues. They said what Walz and DFL leaders brought forward as a financial target isn’t enough.
The two said they work across the aisle for improved wages, and that
program, which starts with ensuring that recognition and diagnosis captures how long COVID may compound challenges they already face and includes ensuring the supports and services that they need are covered. Having a group of clinicians inform how we best take care of Minnesotans from around the state –from our youngest to our elders and from our diverse communities – is essential to building health equity into this work from the very start.”
To better understand the lasting effects of COVID-19 on the lives of Minnesotans, MDH has launched two post-COVID surveys among people who have had COVID-19 – one statewide and one in McLeod County. The surveys will explore long-term symptoms Minnesotans are facing since being infected and how this has affected their lives. Results of the surveys are expected to be available later this year and will be used to identify and guide future MDH actions to address long COVID. Because the virus that causes COVID-19 is not going away, long COVID will continue to impact Minnesotans, the state’s workforce and the economy for the foreseeable future. It is critical that providers are up to date on the latest research, treatments and best practices so that Minnesotans have access to the care and services they need to reduce the impact of long COVID on their lives.
MDH’s long COVID program is currently funded by a Centers for Disease Control and Prevention (CDC) COVID and Health Equity grant through June of 2023. A proposal to extend MDH’s long COVID work has been recommended by Gov. Tim Walz and Lt. Governor Peggy Flanagan. The proposal provides for a sustained public health response for long COVID throughout Minnesota by supplying the essential resources to allow MDH to build on the foundation established with CDC grant funds. More information about long COVID and MDH’s work along with resources and recovery support information are available on the MDH Long COVID website, at https://www.health.state. mn.us/diseases/longcovid/index.html
more funding is needed to stabilize the disability services systems as a whole. “What we care about are your lives,” said Abeler.
Minnesota is the only state where the legislature sets the rates DSPs are paid and their reimbursement rates. A major need is to make changes to the Disability Waiver Rate System (DWRS), for a badly needed update of how disability waiver rates are set. The system now doesn’t reflect current economic conditions. Providers are unable to raise wages to attract and retain staff.
Rep. Jess Hanson (DFL-Burnsville) said that has to change. She has worked on the DSO wage issue for the past few sessions. Hanson said people with disabilities and their caregivers shouldn’t get ‘scraps” when it comes to funding.
She also urged those at the rally to keep showing up and keep contacting their elected officials. “This is how we make change,” Hanson said,. Legislative coverage for Access Press is by Editor Jane McClure.
May 2023 Volume 34, Number 5 Pg 3
HANDI MEDICAL SUPPLY
People at the rally had messages for state lawmakers
Drive-up vaccine clinics were popular when the COVID pandemic began.
End of life options act is crafted in a way that provides protections
Editor’s note: this is a response to the April Access Press editorial, Consider rights of the disabled before allowing assisted suicide. by
Rebecca Thoman, M.D.
As a physician and director of the campaign to pass the Minnesota End-ofLife Options Act (SF1813//HF 1930), I appreciate your thoughtful editorial comments. The End-of-Life Options Act, Introduced by Rep. Mike Freiberg and Sen. Dr. Kelly Morrison, would allow terminally ill adults the option to request and receive medication they can self-ingest for a peaceful death if their suffering becomes intolerable. I recognize that the history of abuse, neglect and trauma inflicted on adults and children with disabilities contributes to mistrust of the medical system and can make this conversation fraught with emotion. The original legislation upon which the Minnesota bill is modeled, crafted in Oregon more than two decades ago, was
designed to account for concerns about the potential abuse of vulnerable populations. That’s why medical aid in dying is driven strictly by the patient and only the patient. Some of the major criteria include:
1) To qualify, a terminally ill adult must have a six-month prognosis (same as for hospice enrollment).
2) They must have full decisionmaking capacity understanding the risks and benefits of their treatment options and be able to give informed consent of their own volition. Substituted judgment (such as from guardians or healthcare proxies) is not allowed.
3) The request must be documented once in writing (which is submitted to the state department of health) and 2 verbal requests must be made to two different physicians or nurse practitioners of the patient’s choice who must document the request in the medical record.
4) Disability, advanced age or chronic
LETTERS TO THE EDITOR
disease in the absence of a six-month prognosis do not qualify a patient for medical aid in dying.
5) The individual must be able to selfingest the medication (by swallowing, use of a gastric or rectal tube). Injections and infusions are explicitly forbidden, as is coercion which carries a criminal penalty.
And, no one, including health care providers, is required to participate. As with reproductive healthcare or genderaffirming healthcare, providers may act in accordance with their own conscience.
Concerns about the potential for abuse were first raised before the Oregon law was enacted in 1997. But now, with 25 years of experience from Oregon (and decades of experience from the other authorizing states), we don’t need to speculate. Data shows that the laws work as intended. In fact, Disability Rights Oregon hasn’t received a single complaint of abuse related to the state’s Death
with Dignity Act. Annual reports from Oregon, Washington, California, Colorado and Vermont show that the vast majority of individuals who chose medical aid in dying were enrolled in hospice and died from cancer, heart or lung disease, or a progressive neurologic disorder like ALS.
The movement for end-of-life options shares basic values with those of the disability rights movement: autonomy, dignity and self-determination. Our goal is to empower people at the end of life through conversations, advance care planning, and expanding end-of-life options. I welcome further discussion.
Thoman is director for Doctors for Dignity, which is part of Portland, Oregonbased Compassion & Choices. Compassion & Choices fights for the rights of people at the end of their life and pushes back against those who seek to strip those rights away. Learn more at https://www. compassionandchoices.org/
Access to rare disease specialists needs consideration by lawmakers
To the editor:
I’m a neurologist at Gillette Children’s and I have an ask for our elected officials that is near and dear to me and the families that we treat. I'm asking them to support the inclusion of SF 1029/HF 384 in the Senate and House HHS omnibus bills. This legislation increases access to the right
specialist for the diagnosis, monitoring, and treatment of a rare disease.
Rare diseases are often complex, chronic, progressive, degenerative, and life-threatening. Many rare diseases affect several aspects of the body, requiring care from different types of specialists. Access to a provider that has the knowledge and
experience to obtain a correct diagnosis or prescribe the correct course of management or treatment is essential for rare disease patients.
This legislation has the potential to reduce the time to diagnosis (from 7-8 years on average), provide cost savings to both the health care system as a whole and
to individual patients and their families, and most importantly increase timely and appropriate access to care for rare disease patients.
Affordable housing availability is essential for people with disabilities
To the editor:
As a social work student in Minnesota, and recently working with clients in Housing Stabilization Services, I have seen firsthand the impact of affordable housing on people with disabilities. Everyone deserves an affordable, stable, and suitable place to call home, and having access to affordable housing is essential for well-being.
The Minnesota House recently passed a bill called HF2335. The bill would provide more than $1 billion in funding for affordable housing programs in the state. This bill includes a proposed 0.25 percent sales tax for the Twin Cities metro area; however, this tax would, among other programs, make possible funding for landlord
mediation support and home rehabilitation financing for people with disabilities.
In Article 4 of the bill, (in Article 4, Section 1, Subdivision 14, line 34.3) agencies could tap into special loans to make housing work for a person with disabilities, when typical financing is not otherwise available. This bill allows agencies to use grants for “accessibility rehabilitation loans” when, according to bill’s wording, “the borrower or a member of the borrower's family requires a level of care provided in a hospital, skilled nursing facility, or intermediate care facility for persons with developmental disabilities;
(2) home care is appropriate; and (3) the improvement will enable the borrower
or a member of the borrower's family to reside in the housing.” From this reading, this looks like more home rehabilitation loan funds available to individuals using waivered services.
This bill specifically includes, (in Article 2, Section 4), the establishment of a statewide housing mediation grant program, citing “people with disabilities,” when talking about supporting the needs of renters along with residential property owners. The proposed mediation grant program includes a provision stating that agencies may use the grant to “increase mediation services for seniors and renters with disabilities and illnesses that face housing instability.”
Passing this bill will demonstrate Minnesota’s commitment to increasing access to affordable housing and promoting the well-being of all Minnesotans. The next step for the bill, HF2335, to become law is for it to be passed by the Senate and if they approve the bill, it will be sent to Gov. Tim Walz for his signature. I urge Minnesota residents to contact your senator in your district, and the governor, to voice your support of HF2335.
AnnaMarie Ronning Graduate Student, Social Work
Henrietta Schmoll School of Health Sciences St. Catherine University
Low pay is a primary obstacle when Minnesotans are trying to hire care staff
Editor’s note: The letter refers to our ongoing coverage of the Cindy Hagen guardianship case.
To the editor:
Surely people to fill vacant positions is a problem, but a greater problem is the low pay. When I can go to McDonald's where I live and make more money, or across into North Dakota and make $22 an hour doing the same work, there is a problem with pay in Minnesota. As long as we buy into the narrative it is a lack of people to work it is difficult to point to the real problem as I see it.
For us in northwest Minnesota services for people with disabilities started to suffer as soon as the state let out-of-region businesses say they can provide home services in our area when they have no offices or staff. Minnesota has the best
services on paper but in practice it is dismal. North Dakota is light years ahead of Minnesota and it is a very conservative State, their legislators see the value in funding community-based services and its long-term savings. It is despicable that guardianship is used to try to take a person’s freedom away because the State cannot design nor fund programming for
rural areas. Options assisted more than 100 people from either going into or preventing placement into institutional care last year in North Dakota where services work. In contrast in Minnesota we assisted three people to file ADA complaints because they ended up in institutions due to underfunded poorly designed programs. rural North Dakota has more in common
with northwest Minnesota than the metro so why can you find help in North Dakota?
THEY DESIGN PROGRAMMING FOR RURAL AREAS AND FUND PROGRAMMING!
Randy Sorenson, Executive Director Options Resource Center for Independent Living, East Grand Forks
May 2023 Volume 34, Number 5 Pg 4 FROM OUR COMMUNITY
Feyma, MD Pediatric Neurologist Gillette Children’s
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Fifty years of empowering people are celebrated by Wingspan
by Darolyn Gray
“To inspire community by empowering people with disabilities to live their best life” has been a focus for Wingspan since 1973. As pioneers in person-centered planning, Wingspan goes above and beyond to offer as full and meaningful a life as each individual is able to achieve. With its commitment to accessibility and inclusivity, Wingspan’s focus is on ability and not DISability.
Wingspan has served adults with developmental and other disabilities in the greater Twin Cities for 50 years. Executive Director Therese Davis has been with the organization for 46 of those years and is one of the disability community’s most ardent advocates.
Our story is one of change. The organization began as Clinton Club, a 30-bed home board and care facility in Minneapolis for women with developmental disabilities that had been abandoned by its owner. The residents, many with very significant disabilities, were left to fend for themselves.
Observant women at a local church noticed that something was seriously amiss. Catholic Charities initially took over the facility, St. Ann’s, in 1973. A nonprofit was established and Wingspan evolved. Today, the organization has 30 group homes and an in-home program for those still living with family or independently. “I’ve never lost sight of our incredibly rich history because it is so strongly linked to who we are today. Service trends, buildings, people come and go, but we still stand firmly with the vision we created back in the 1970s because, at its core, it was so right and so strong that it is still relevant and always in line with whatever passing trends come and go,” Davis said.
Many clients attend day programs for socialization or employment. Wingspan offers numerous enrichment programs throughout the year. The Glee Club has been going strong since 2013.
Among the other music and visual arts offerings, Wingspan has also offered groundbreaking opportunities including a first-of-its-kind spoken word and poetry club in collaboration with Compas.org.
Wingspan also collaborated with Alliance Francaise of Minneapolis/St. Paul to start a nine-week French Club. Clients learned French phrases and songs, explored customs and art, and prepared a meal with a French chef. Both of these innovative programs exceeded expectations.
Pushing the boundaries to meet needs, Wingspan started Rainbow Support Group (RSG) in 2001 to provide education and peer support to LGBTQ adults with developmental disabilities-perhaps the most marginalized individuals in the LGBTQ community. Two key focus areas for RSG include reducing isolation and increasing safety.
In April of this year, the Minnesota Department of Human Services granted Wingspan almost $100,000 for the group to expand its outreach in Minnesota. RSG meets at least monthly and is also welcoming to those who are not Wingspan clients. The outreach program will include a series of training workshops regionally and will increase opportunities for LGBTQ people with developmental disabilities to receive education, connect with resources, and to socialize and engage in community events. Interested providers may contact Program Director Deb Hofbauer at email@example.com
In 2020, Wingspan initiated its Specialized Services Unit to provide crisis services and other services adapted for individuals with high behaviors and unique needs. Staff working in these homes receive many hours specialized training, and the homes are modified extensively for optimum safety of clients and staff.
Davis coaches staff to listen with love, and to look beyond the person’s diagnosis and behaviors to see the human being
inside. Davis said, “One of my favorite quotes from Martin Luther King is about service. He said, ‘Everybody can be great . . . because everybody can serve. You don't have to have a college degree to serve. You don't have to make your subject and verb agree to serve. You only need a heart full of grace. A soul generated by love.’ I am so very proud of our staff for their commitment to a field that is not without its daily challenges.”
Wingspan’s Power of Love gala will take place at 6 p.m. Tuesday, May 23 at the Metropolitan Ballroom in Golden Valley.
Senators Jim Abeler and John Hoffman, two of the disability community’s strongest legislative voices, will attend. The event includes a social hour, live and silent auction, dinner, and entertainment by Jamecia Bennett, lead vocalist for the Grammy-award winning Sounds of Blackness. A highlight will be an inspirational program including a 50-Year Retrospective. To register for the event, call 651-888-3112.
To learn more about Wingspan Life, visit www.wingspan life.org.
Darolyn Gray is development director at Wingspan.
May 2023 Volume 34, Number 5 Pg 5 FROM OUR COMMUNITY
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Wingspan's executive team
Therese Davis and her dog, Gracie
Disability Services Day at the Capitol drew large, enthusiastic crowd
May 2023 Volume 34, Number 5 Pg 6
As the crowd gathered, some found a vantage point higher up.
Signs urged lawmakers to see and invest in people with disabilities.
The rally and lobby day lead sponsors had their names on display.
Banners hung from the rotunda railings.
Gov. Tim Walz and Lt. Gov. Peggy Flanagan addressed
participants asked lawmakers to "Invest in Us." ARRM Live life your way with AT. LEARN PLAY WORK CONNECT LIVE ASSISTIVE TE CH NO LO GY (AT) A collaboration of Minnesota STAR, Disability Hub MN™ and Senior LinkAge Line® Visit the lending library at mn.AT4all.com to browse and loan items today! Or call 1-888-234-1267 for more information about this free service. Try AT before you buy it! Borrow a device through the Minnesota STAR Program’s online AT lending library to try at home, school, work, or while you play. ASSISTIVE TECHNOLOGY, also known as AT, can help you do things that might otherwise be difficult or impossible to do on your own.
Deaf, deafblind and hard of hearing Minnesotans honored at rally day
Hundreds of Minnesotans who are deaf, deafblind, hard of hearing, and their family and friends gathered for their annual rally day this spring, with the theme of “Access Empowers Us.” Making access happen from the start and not as an afterthought, allows for individuals to fully participate in everyday activities and events. To do so, barriers need to be eliminated in order to make it inclusive for everyone regardless of ability.
Not only did the large crowd advocate for pending legislation, they also took time to salute those who make a positive difference for their community. Several Minnesotans were honored for their contributions to the deaf, deafblind, and hard of hearing communities through advocacy, community engagement, education, improving accessibility and other activities to improve the lives of community members.
Lifetime Achievement awards went to five people. These awards are for community members who have done distinctive work for and with deaf, deafblind, and hard of hearing Minnesotans for more than 20 years.
Ralph Fuechtmann was a recipient of the Lifetime Achievement Award. He is a community-centric person who is known for his commitment to the deaf community for more than 40 years. Fuechtmann has been fondly known as the “Go to” for most community needs.
Fuechtmann has been involved with committees and served as a board member for many organizations and projects, including MinnePaul, International Catholic Deaf Association, Thompson Hall, Midwest Athletic Association, the Minnesota Association of Deaf Citizens, and Minnesota Deaf Senior Citizens. He has a big heart for volunteering within the community and is helpful, caring, resourceful, and happy to share with others.
In 2008, he was honored in the Minnesota State Academy for the Deaf Alumni Association Hall of Fame.
He was a basketball player in the 1969 and 1973 Deaflympics, as a gold medalist on the U.S. team in Belgrade and Malmo, playing on the United States team. In 1987, he was added to the Deaflympics Hall of Fame.
Mary Bauer was recognized for her longtime service to the community through her work at the Minnesota Department of Human Services (DHS), Deaf and Hard of Hearing Services Division. Bauer recently retired after providing resources and support and helped improve the lives of people in the metro and Minnesota with varying hearing levels. She did a lot of work on age-related hearing loss, veterans with hearing loss, and accessible venues for people with hearing loss.
Bauer was the second child in her family with a hearing loss. She taught and then worked as a nonprofit before going to the state. She worked for the state for nearly 30 years, enjoying her clients and coworkers.
She also served on many accessibility advisory committees. As a result of her work on sport stadiums’ committees in the Twin Cities, there is now a national standard (requirement) to have at least one ticket window at stadiums that has a telecoil "loop" installed in it.
Cheryl Blue also received a Lifetime Achievement Award. Another longtime
DHS employee, Blue served rural Minnesota in the Deaf and Hard of Hearing Division as a specialist. She’s made a difference in the Duluth community, including advocating for captions on the local news, accessible smoke and carbon monoxide alarms, and more.
Blue started her career working in mental health in Los Angeles and the Twin Cities, before joining the Minnesota Deaf Hard of Hearing Services Division in 1988. She moved from the metro office to Crookston/northwest region and then to Duluth/northeast region. Some of her most recent accomplishments include serving on the Arrowhead Agency on Aging, Advisory Committee on Aging for many terms. During that time, she worked with the agency director on an educational video project for the Senior Linkage Line. She also launched the North Shore ASL Community meetings that have been gone on for more than three decades. She recently retired from the state.
Another Lifetime Achievement winner is Paul Deeming. Deeming is a longtime interpreter, who provides language and cultural interpretation between users of English and ASL. He is a specialist in working with deafblind consumers who use low vision, tactile and/or Protactile techniques.
Deeming provide trainings related to best practices, communication and interpretation with deaf and deafblind people. He has been working as a sign language interpreter for 30 years and with the deafblind community for more than 26 years. Before starting his own firm, he worked at Deafblind Services and Metropolitan State University.
The fifth lifetime Achievement Award honoree is Amy McQuaid-Swanson. She was recognized for her work at the DHS Deaf and Hard of Hearing Services Division. She has more than 40 years’ experience with the state. In her division she is described as the glue that held things together through several transitions and worked to keep her division separate. She has also overseen the distribution of millions of dollars of state funding.
McDaid-Swanson holds a master’s degree in human services administration from the University of Minnesota, St. Mary’s graduate school.
Two people won the Youth Award. Mujahid Zafar was honored for advocating for captions at a local movie theater. Justin Smith was recognized for advocating for accessible housing Citizen Advocate Awards went to Avi Rosen for advocating for improved hospital accessibility and to Jessica Eggert for advocating
for Braille prescription labels at pharmacies. Stephanie Steidl and Leah Henrikson were honored with the Civic Engagement Award. They were recognized on behalf of parents who advocated for the Vivian Act, which led Minnesota to become the first state to screen all newborn babies for congenital cytomegalovirus, which can cause hearing loss in babies.
Education Excellence Awards were given to two people. Debbie Golos is a professor at the University of Minnesota, Twin Cities and Deaf/Hard of Hearing licensure and M.Ed. coordinator. Michele Heise is a teacher and sports coach at the Minnesota State Academy for the Deaf and sports coach.
The Access Award went to Kaylah Vogt for advocating for equitable employment hiring and onboarding practices.
The Humanitarian Award was presented to Wilderness Inquiry for the programs and opportunities provided to the deaf, deafblind, and hard of hearing community, connecting them to the outdoors.
The Minnesota Commission for the Deaf, DeafBlind and Hard of Hearing is a governor-appointed commission that advocates for communication access and equal opportunity with the 20 percent of Minnesotans who are deaf, deafblind and hard of hearing.
May 2023 Volume 34, Number 5 Pg 7
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Award winners happily displayed their plaques. The awards were presented by the Minnesota Commission for the Deaf, DeafBlind and Hard of Hearing.
PEOPLE & PLACES
Commission leader Darlene Zangara, left, presented an award to Ann McQuaid-Swanson. Ralph Fuechtmann, right, addressed the crowd as Zangara looked on.
While the labor market remains strong in Minnesota, a new state report shows the situation got better for employers at least in the first half of 2022. But challenges continue in hiring personal care staff, with 7,798 vacancies statewide. There is also strong demand for other health care staff, with high vacancies for registered nurses (5,625) and nursing assistants (4,418).
The report shows the number of overall job vacancies dropped 10 percent during the second quarter of 2022. Minnesota employers reported 184,588 job vacancies during the quarter, with the largest number of job openings in the health care (45,000), retail (28,500), hotel/food services (26,000) and manufacturing (19,000) sectors, according to the Minnesota Department of Employment and Economic Development (DEED).
There were 6.9 job openings for every 100 jobs in the state, creating the state's third-highest job vacancy rate since the state started tracking data in 2001, officials said.
Coming out of the worst economic disruption caused by the pandemic, the labor shortage at the beginning of 2022 was extreme, so a 10 percent decline was a step forward.
Minnesota had about 72,500 unemployed workers in second quarter 2022, meaning that the labor market remains extremely tight. There were more than twice the number of open jobs as unemployed people in the state.
The survey shows “continued strong demand for workers across the state,” said Interim DEED Commissioner Kevin McKinnon in a statement. “The tight labor market presents opportunities for people looking for work in Minnesota. It also presents challenges for employers who need workers to continue operations and grow their business.”
Despite news of layoffs among giants such as 3M, Bright Health, Facebook, Google and Dell Technologies, the number of job openings in Minnesota has remained level and even grew in recent months.
According to the U.S. Bureau of Labor Statistics, which reports state job opening estimates monthly, Minnesota's job openings fell from 231,000 in December 2022 to 212,000 in January 2023, the most recent data available.
Employers and members of the Minnesota Chamber of Commerce continue to complain that they can't find enough workers with the skills they need to fill certain jobs.
Chamber and state officials are encouraging employers to offer training and to expand their prospective job candidate lists by considering hiring more immigrants, people of color, workers with disabilities and those with military service or non-violent criminal records.
Guardianship case coming to close
A case closely watched by disability advocates appears to be coming to a close. A judge has vacated a court-ordered guardianship and conservatorship for Cindy Hagen. She has been living in Mayo Clinic’s Austin hospital since last summer. Hagen, 49, is quadriplegic as a result of injuries sustained as a child in a car crash. Earlier this year, a judge put Hagen under emergency guardianship and conservatorship after attempts to discharge her to an appropriate facility failed.
Blue Earth County Human Services petitioned the courts for the guardianship. According to court documents, the county was unable to find in-home care for Hagen, which she had previously had at her apartment in Mankato in part due to widespread staffing shortages. Hagen was offered services in skilled nursing facilities or in an apartment in the Twin Cities but she did not agree to them, according to court documents.
Hagen has said in court documents she instead wanted to go home to her apartment where she lived for years until 2020.Her situation highlights challenges in some of the systems that surround people living with disabilities, said David Dively, executive director of the Minnesota Council on Disability.
Recent legislative changes make it harder to put people living with disabilities under guardianship. But courts and families have been slow to embrace those changes, he said.
“ We want to move as far away from guardianship as realistically and practically possible, because it is so restrictive. And in Minnesota, we do it pretty heavy handedly,” he said.
Instead, disability advocates say the state — and nation — should be moving toward a process of “supported decision-making.”
A big challenge, however, are staffing shortages in assisted living facilities and in the profession of in-home care shortages made worse by the pandemic.
More and more, patients who no longer need acute care end up stuck in the hospital as a result, said Mayo Clinic Dr. Tamara Buechler, who works in Rochester.
“In these past couple of years with the pandemic, the challenges have only increased,” she said. “In any given quarter we have over 900 delays related to post-acute care. On any given day, in our hospital 10 percent or more of the population are patients who are delayed in the hospital setting because we need to establish a next level of safe care for them.”
Court documents say Hagen's guardianship and conservatorship will be reinstated if she doesn't move home within 45 days.
(Source: Minnesota Public Radio)
Students practice mental health response
"I need to get that B average; otherwise, I'm going to lose my scholarships, I'm going to lose my place in this program, I'm going to lose everything," exclaimed second-year nursing student at St. Catherine University Madi Pohl.
Pohl participated in a recent simulation at St. Kate's as a crisis actor portraying Casey, a student overwhelmed by anxiety. The simulation was the first of three this year intended to help students, particularly health care students, respond to similar situations that could arise at college and beyond.
K rista Anderson, director of simulation at the school of health, said an environment of increased hostility toward health care workers joined with recent violence on college campuses escalated the importance of providing this training. In the 2020-2021 academic year, more than 60 percent of college students met the criteria for one or more mental health diagnoses, a 50 percent increase from 2013, according to research on trends in college student health and help-seeking in the Journal of Affective Disorders.
“ We hear here on campus that there's a lot of students who are struggling with mental health, whether it's depression, whether it's anxiety,” said Anderson. “And then you think about the news, and there's shootings and there's violence and there's things happening, and we really wanted to provide some education that would apply to anybody.”
T he training, attended by about 20 students, began with a presentation on practical steps to recognize, respond and refer to a person in crisis due to high anxiety. Among them were approaching the person with a wide, open stance, using short, soft words and offering validation. Students were then split into groups to practice the skills they had learned with a crisis actor like Pohl, who sat turned away, one leg bobbing up and down, as she breathlessly explained the impossibility of completing the overwhelming tasks in front of her.
Two students approached Pohl at a time, practicing different techniques to see what would be most effective in deescalating her emotions.
According to Anderson, simulation is growing as a method of training for health care students, especially since COVID-19. She said research indicates little difference in learning for students completing all clinical experiences in a professional setting versus those replacing half of them with simulations. For a small, private school like St. Kate's, providing more learning on campus is often more practical
(Source: Star Tribune)
and convenient for students.
“ You only have so many clinical sites," said Anderson. "If we can support and create health care simulation scenarios that represent a wide variety of different types of clinical situations, we can provide those experiences internally.”
(Source: Pioneer Press)
Delayed assessments are concerning Delayed assessments of autism in children remain a problem, particularly in Minnesota, that worsened in the first year of the COVID-19 pandemic.
Evaluations of children at age 4 had been increasing from 2017 to 2019 but sharply declined in mid-2020, according to a report Thursday from the Centers for Disease Control and Prevention, which tallied autism rates in the Twin Cities and 10 other U.S. communities. Evaluations increased later that year in most other communities after lockdowns and other COVID-19 restrictions were lifted, but not in Minnesota.
Research over time will tell whether the disruption resulted in delayed diagnoses that affected growth and development of children with autism, said Amy Esler, a University of Minnesota psychologist who co-authored the CDC report.
“ What we know from other research... is that any delay to identify, any delay to intervention, has long-term impacts,” she said.
Despite the delays, a companion study found an increase in autism prevalence in 2020. One in 34 8-year-olds in Minnesota had autism based on medical or educational evaluations, according to the CDC report, which is based on data from school districts in Hennepin, Ramsey and Anoka counties.
“Autism really is no longer a lowincidence disability, based on these numbers,” said another U co-author,
Jennifer Hall-Lande. “If we think of an average third-grade class in Minnesota, it is now likely there will be at least one child with autism in that class.”
The CDC group for the first time estimated that more than 1 percent of female 8-year-olds have autism, though the diagnosis remains four times more likely in males. The increased prevalence isn't necessarily a sign the developmental condition is becoming more common. Diagnoses had been lacking in minority groups, and at least some of the increase reflects better recognition of the disability in those groups.
T he 2020 version of the biennial report was the first to estimate a higher prevalence rate of autism in black and Hispanic children in the U.S. compared with white children. Diagnoses historically were more common among children from white middle- and upper-income families with the means to seek evaluations.
A mong the sites studied, Minnesota had the highest percentage of children with autism who had only received a special education designation and the lowest percentage with a medical diagnosis. The median age of a medical diagnosis among the 8-year-olds with autism was 4 years, 11 months in Minnesota. That was 10 months longer than the national median, which is a problem because a diagnosis unlocks services that aren't available with a special education designation, said Ellie Wilson, executive director of the Autism Society of Minnesota.
We use a diagnosis like a ticket in order to qualify for those service programs,” she said.
Even in a non-pandemic year, it takes months to get medically evaluated because of a shortage of providers in Minnesota. The U's autism clinic stopped adding names in 2021 after its waiting list reached 600.
School closures contributed to the decline in 2020 in school and medical autism evaluations. Children weren't in day-care facilities or schools, where teachers often notice developmental differences among other children and recommend autism screening.
Children with autism also are more likely to have other health conditions that can worsen the risks of severe COVID-19, which might have convinced parents to delay evaluations until a vaccine was available in 2021, said Rebecca Vaurio, a neuropsychologist at Children's Minnesota.
(Source: Star Tribune)
May 2023 Volume 34, Number 5 Pg 8
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Vacancies continue to be high for personal, health care posts
PEOPLE AND PLACES
Hancock-Allen is new leader in MDH's infections disease division
The Minnesota Department of Health (MDH) has hired Jessica Hancock-Allen as the new director of the Infectious Disease Epidemiology, Prevention and Control Division (IDEPC). The division is the MDH unit chiefly responsible for monitoring for infectious diseases and for developing strategies to prevent and control them to protect Minnesotans.
Hancock-Allen will start at MDH
Several appointed to boards, commissions and committees
Gov. Tim Walz and Lt. Gov. Peggy Flanagan have announce appointees to several state boards, commissions and committees that serve people with disabilities.
New and returning members were appointed to the Board of Occupational Therapy Practice. Mary Bartzen, South Haven, was reappointed as non-metro occupational therapist. Jessica Engman, White Bear Lake, was reappointed as metro occupational therapist. Katelyn Bills, St. Cloud, was appointed as a public member, replacing Jeffrey Malikowski. Karoline Pierson, St. Louis Park, was also appointed as a public member, replacing Stephen
Help find discrimination; be a housing tester
On April 11, 1968, housing discrimination was banned by law. But 55 years later, it still happens. MidMinnesota Legal Aid (MMLA) and Legal Aid want to make sure it doesn’t happen. People with disabilities can help by volunteering as testers.
“We’ve come a long way since the signing of the Fair Housing Act, but we have a long way to go, which is why we’re making a public appeal to increase the numbers of volunteers on our teams of testers,” said Elana Dahlager, MMLA attorney, Testers are volunteers who go out when a complaint of housing discrimination comes into Legal Aid. They pose as housing applicants and document their experiences.
Before the COVID pandemic, MMLA’s testing teams operated under the radar. Post-pandemic, MMLA is launching a not so quiet restart, publicly urging people of every age, color, national origin, ability, gender and sexual identity to join the effort.
MMLA reminds the community that housing discrimination can be subtle. Landlords and property owners who favor some housing applicants over others might not know that their reasons for doing so could be a violation of housing law.
"If they're not aware of fair housing practices, they should be, because we're out there, making sure the law is being followed,” said Housing Investigations Coordinator Erica Whitaker.
Detecting discrimination requires training. For those who step up as testers, free training will be provided by Mid-Minnesota Legal Aid. To volunteer, reach out to Erica Whitaker at Ewhitaker@mylegalaid.org.
in May 2023. Kris Ehresmann, who retired in February 2022, was the most recent director of the division. Since her retirement, the post has been filled on an interim basis by Emily Emerson. Emerson will return to her previous role as assistant division director when Hancock-Allen joins the department.
“We are excited to have Jessica join MDH,” said MDH Assistant Commissioner Dan Huff. “From managing infectious disease investigations to helping us coordinate response efforts with partners in health care and local public health, the director of our infectious disease division is a key part of our leadership team. We look forward to adding her knowledge and experience to our work protecting the health of all Minnesotans.”
Jobe. Barbara Kloetzke, Shoreview, was appointed as metro occupational therapy assistant, replacing Lynette Buckley Beth Elstad, Duluth was appointed as chair of the Governor’s Advisory Council on Opioids, Substance Use, and Addiction.
The Commission of the Deaf, DeafBlind, and Hard of Hearing has new and returning members. Aaron Peterson, Warren, is the Northwest Bemidji Advisory Council representative, replacing Les Fairbanks. Krista Dillman, Kimball, and Peggy Nelson, Minneapolis, were reappointed as atlarge members. Jessica Eggert, Eagan, was appointed as an at-large member, replacing Tricia Oyaas. John Fechter, was appointed as an at-large member,
From page 1
An employee illness could be covered for up to 12 weeks. A payroll tax proposed to pay for this has raised objections from business groups.
An issue being watched closely in Greater Minnesota is the agriculture, broadband and rural development bill. For many Minnesotans with disabilities
From page 1
disability-related civil rights court rulings in U.S. history. The 1999 U.S. Supreme Court decision was based on the Americans with Disabilities Act (ADA).
In that case, the high court ruled that people with disabilities have qualified rights to receive state funded supports and services in the community, instead of living in institutions. That is tied to a three-part test. One is that a disabled person's treatment professionals determine that community supports are appropriate. The second is that the person does not object to living in the community. The third part in the test is that providing services in the community would be a reasonable accommodation, when that is balanced with other similarly situated people with disabilities. The intent is for disabled people to live in the least restricted setting possible.
Plaintiffs in Murphy versus Harpstead contend that corporate adult foster care and group homes cause isolation and segregation. They want access to various individualized housing services available under disability waivers, for more integrated housing options. They want to be in their home communities.
In the 1970s when Minnesota began closing its large state institutions for people with disabilities, group homes were seen as a viable alternative. But more recently, that has changed. Part of the change may be tied to the staffing shortage felt statewide. The class action lawsuit states that DHS maintains a “discriminatory residential service system.” When the lawsuit was filed in 2016 there were about 3,500 group homes around the state. One complaint is that people in group homes lack control over their lives and feel helpless. Another is
Hancock-Allen is a nurse practitioner with extensive experience in high-profile public health services. She most recently worked at St. Paul-Ramsey County Public Health, where she managed the tuberculosis control program and clinic. In this role, she focused on improving patient-centered operations, improving communication across teams and implementing community engagement efforts. From 2020 to 2021, she led COVID-19 prevention and control efforts for Catholic Charities of St. Paul and Minneapolis, which serves thousands of people experiencing homelessness. Earlier she established and ran the medical respite program at Higher Ground in St. Paul for Catholic Charities.
Before arriving in Minnesota, HancockAllen served as an epidemic intelligence
replacing Ryan Odland.
Nicholas Volkmuth. Princeton, was appointed to the Council on Disability, replacing John Fetcher. Quinn Nystrom, St. Michael, replaces Saido Abdirashid. Mai Vang, St. Paul, replaces Judith Moe.
Dawn Bly, Fosston, Andrew Christensen, Northfield, and Nichole Villavicencio, Maplewood, were reappointed. Villavicencio is council chair.
The Council on Disability advises and aids the governor, state agencies and the public on policy and the administration of programs and services for people with disabilities in Minnesota. The council advises, provides technical assistance, and collaborates with advocates to expand opportunities, improve the quality of life, and empower all people
who live in rural areas, improved broadband service is a potential lifeline to education, work, health care and personal connections. One proposal in play is $100 million for broadband expansion.
While that form of infrastructure seems to be on track, there’s uncertainty about brick-and-mortar requests. 2022 was the bonding session but a bill failed to pass during the end-of-session meltdown. Requests for state hospitals and
that people with disabilities are sometimes placed in group homes far away from their families, friends and networks of support.
Olmstead has long been a sore point for many disabled Minnesotans as the state was one of the last in the country to file its required draft Olmstead plan. Minnesota didn’t file its draft plan with the federal court until November 2013, years after other states filed their plans. The plan won provisional court approval in 2014. But goals still have not been meet, despite ongoing work.
Minnesota’s Olmstead plan indicates that by June 2019 the state did plan to move 5,547 people into more integrated housing. There were also assurance that community alternatives would be greatly expanded for Minnesotans with disabilities. One argument in the case is that Minnesota still doesn’t have a detailed plan for how it can provide options and
service officer with the U.S. Centers for Disease Control and Prevention stationed in Colorado. In this role, she led a range of outbreak investigations and served in deployments to Sierra Leone and The Gambia during the 2014-2015 Ebola outbreak. Early in her career, she was a nurse in the cardiac intensive care unit at Massachusetts General Hospital and with the Denver Hospice.
Hancock-Allen earned master’s degrees from the Harvard School of Public Health and Simmons College in Boston. Prior to that, she served as a health, water and sanitation Peace Corps volunteer in rural Ghana. She has undergraduate degrees from Johns Hopkins University School of Nursing and from Wake Forest University.
Samantha Flax, Minneapolis, is an advocate member for the State Rehabilitation Council for the Blind, replacing Mohamed Mohamed. Ryan Haenze, Stillwater, is client assistance program representative, replacing Kristina Petronko. Robert Hobson Jr., Maplewood, is vocational rehabilitation counselor member, replacing: Jessica Fordyce. Kristin Oien, Minneapolis, is Minnesota Department of Education representative, replacing Carolyn Cherry. Jennifer Points, Stacy, is the business, industry, and labor representative, replacing Mary Thompson.
academies, and accessibility improvements for state buildings and parks are among the asks renewed this session. While the House approved a $1.5 billion bonding bill this spring and then added $4000 million in general fund dollars for additional projects, the effort was shelved in the Senate because it failed to gain the needed “supermajority” of votes to pass.
reduce reliance on group homes.
The court case has generated many documents. Buried in the issue are the stories of the people affected. One example is plaintiff Tenner Murphy, who is from a well-known St. Paul area family. Murphy is in his 30s, and has had a lifelong battle with cancer that has caused his cognitive and physical disabilities. He had previously enjoyed outdoor activities including archery and walking, according to court documents.
But when Murphy moved to a group home, he was forced to use a wheelchair because the facility lacked staff to assist him on walks.
Murphy’s case was filed with help from his parents, Kay and Richard Murphy. His father has died since the case was filed.
Learn more about the rally at https://www.facebook.com/ groups/149428685664920
May 2023 Volume 34, Number 5 Pg 9
RADIO TALKING BOOK
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All about Radio Talking Book
The sampling published monthly in Access Press doesn’t represent the full array of programming on Radio Talking Book (RTB).
RTB is not just for listeners with visual disabilities. Anyone with difficulty reading or turning pages can enjoy the service. Enjoy programming on a mobile device, for either iOS or Android. Visit the Apple App Store or Google Play, and download the Minnesota Radio Talking Book app.
Listen to RTB’s live or archived programs online at www.mnssb.org/rtb
Books broadcast are available for loan through the Minnesota Braille and Talking Book Library in Faribault. The catalog is at www.mnbtbl.org, click on the link Search the Library Catalog. Call the Minnesota Braille and Talking Book Library at 800-722-0550, Mon-Fri, 9 am-4 pm CST.
For updates, go to the Facebook site Minnesota Radio Talking Book.
Audio information about the daily book listings is on the National Federation for the Blind (NFB) Newsline. Register for NFB Newsline by calling 651-539-1424. The NFB-NEWSLINE service provides access to more than 500 magazines and newspapers. To learn more, visit www.nfb.org/programsservices/nfb-newsline
Donate to the State Services for the Blind at mn.gov/deed/ssbdonate
If listeners have ideas or feedback about books or programs broadcast, contact the staff. For newspapers and programs, contact Tony Lopez at tony.lopez@state. mn.us or 651-642-0880. For books, contact Joseph Papke at joseph.papke@state. mn.us or 651-539-2316. Callers from Greater Minnesota please call 1-800-652-9000 and ask for Lopez or Papke.
Monday – Friday 6 a.m.
The Anxious Investor, nonfiction by Scott Nations, 2022. A guide to becoming a smarter investor and reaching your financial goals. Read by Greg Olson. Nine broadcasts; begins Mon, May 15. – L
The Socratic Method, nonfiction by Ward Farnsworth, 2021. A thinking person’s guide to a better life that explains what the Socratic method is, how it works and why it matters more than ever in our time. Read by Stevie Ray. 11 broadcasts; begins Mon, May 29.
Past is Prologue
Monday – Friday 11 a.m.
The Earth is All That Lasts, nonfiction by Mark Lee Gardner, 2022. A new history of the fierce final chapter of the “Indian Wars” as told through the lives of the two most legendary and consequential American Indian leaders. Read by Eric Watkins. 15 broadcasts; begins Mon, May 1.
The Ruin of All Witches, nonfiction by Malcolm Gaskill, 2021. A gripping story of a family tragedy brought about by witch-hunting in Puritan New England that combines history, anthropology, sociology, politics, theology and psychology. Read by Dan Sadoff. 12 broadcasts; begins Mon, May 22. – V
Monday – Friday 12 p.m.
Olav Audunssøn 2: Providence, fiction by Sigrid Undset, 2020. The second volume in the Nobel Prize–winning author’s tumultuous, epic story of medieval Norway. Read by Don Lee. 12 broadcasts; begins Wed, May 3. Waterfall, fiction by Mary Casanova, 2021. A compelling story of an inspired, ambitious, and soulful young woman’s fight to find her way in 1920s northern Minnesota. Read by Brenda Powell. 10 broadcasts; begins Mon, May 22. – S
The Writer’s Voice*
Monday – Friday 1 p.m.
She's Nice Though, nonfiction by Mia Mercado, 2022. Essays offering a mindbending glimpse into the illusions and delusions of contemporary life. Read by Yelva Lynfield. 12 broadcasts; begins Wed, May 10.
The Fighting Soul, nonfiction by Ari RabinHavt, 2022. An unparalleled and intimate account of Bernie Sanders from one of his most trusted confidants. Read by Jim Tarbox. 12 broadcasts; begins Wed, May 24.
Monday – Friday 2 p.m.
The Lawless Land, fiction by Boyd and Beth Morrison, 2022. A fast-paced medieval adventure about a young knight reclaiming
his family’s land and reputation. Read by Yelva Lynfield. 19 broadcasts; begins Mon, May 1.
Dr. No, fiction by Percival Everett, 2022. A sly, madcap novel about supervillains and nothing, really. Read by Andrea Bell. Eight broadcasts; begins Monday, May 29. – L
Monday – Friday 4 p.m.
The Four Ages of American Foreign Policy, nonfiction by Michael Mandelbaum, 2022. A new and unique framework for understanding the history of the foreign policy of the United States. Read by Jim Gregorich. 21 broadcasts; begins Tue, May 23.
Monday – Friday 7 p.m.
No One Left To Come Looking For You, fiction by Sam Lipsyte, 2022. A darkly comic mystery set in the vibrant music scene of early 1990s New York City. Read by Tom Speich. Six broadcasts; begins Wed, May 10. – L Cougar Claw, fiction by Cary J. Griffith, 2022. An outdoors mystery where special agent Sam Rivers investigates the unexplained cougar attack that killed a wealthy business owner. Read by John Gunter. 11 broadcasts; begins Thu, May 18.
Off the Shelf*
Monday – Friday 8 p.m.
Sugar Street, fiction by Jonathan Dee, 2022. A risky, engrossing, and surprisingly visceral story about a man trying to escape his own troubling footprint and start his life over. Read by Roger Sheldon. Seven broadcasts; begins Wed, May 3. – L, S
Cyclorama, fiction by Adam Langer, 2022. A deeply moving, propulsive story of ten teenagers brought together by a high school production of The Diary of Anne Frank that will shape and influence the rest of their lives. Read by Holly Sylvester. 14 broadcasts; begins Mon, May 15. – L, S Potpourri*
Monday – Friday 9 p.m.
Zabar’s, nonfiction by Lori Zabar, 2022. A fascinating, mouthwatering story of the immigrant family that created a New York gastronomic legend. Read by Philip Lowry. Seven broadcasts; begins Thu, May 4.
Meet Me by the Fountain, nonfiction by Alexandra Lange, 2022. A highly
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entertaining and evocative promenade through the mall’s story of rise, fall, and ongoing reinvention. Read by Pat KovelJarboe. 12 broadcasts; begins Mon, May 15.
Good Night Owl*
Monday – Friday 10 p.m.
And There He Kept Her, fiction by Joshua Moehling, 2022. When two teenagers break into a house on a remote lake in search of prescription drugs, what starts as a simple burglary turns into a nightmare for all involved. Read by Eileen Barratt. 11 broadcasts; begins Tue, May 2. – L, V, G
The Crocodile Bride, fiction by Ashleigh Bell Pedersen, 2022. A heartbreakingly tender coming-of-age tale set in 1982 Louisiana. Read by Carol McPherson. 12 broadcasts; begins Wed, May 17. – S, V
RTB After Hours*
Monday – Friday 11 p.m.
The Bookseller’s Boyfriend (rebroadcast), fiction by Heidi Cullinan, 2021. A bookshop owner can’t believe his longtime celebrity crush is moving to his small town. But you should never meet your heroes. And you definitely shouldn’t pretend to be their boyfriend. Read by Eileen Barratt. 10 broadcasts; begins Tue, May 2. – S
The Dead Romantics, fiction by Ashley Poston, 2022. A disillusioned millennial ghostwriter who, quite literally, has some ghosts of her own, has to find her way back home. Read by Pat Muir. 12 broadcasts; begins Tue, May 16. – L, S
Weekend Program Books
Your Personal World, 1 p.m. Sat, presents This Is How Your Marriage Ends by Matthew Fray, read by Beverly Burchett. – L
For the Younger Set, 11 a.m. Violet Made of Thorns by Gina Chen, read by Pat Muir. Poetic Reflections, noon Sun, presents Reenactments by Hai-Dang Phan, read by Mary Knatterud; followed by Turn Up the Ocean by Tony Hoagland, read by Mary Knatterud.
The Great North, 4 p.m. Sun, presents A Private Wilderness by Sigurd F. Olson, read by Judith Johannessen.
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Steps for Autism
The Autism Society of Minnesota (AuSM) hosts its 23rd Annual Steps for Autism in Minnesota 9 a.m.-noon Sun, May 21 at Como Lakeside Pavilion, St. Paul. Individuals, families, businesses, organizations, and community groups are encouraged to register for free and build teams to raise money to support AuSM’s programs and services. The event doubles as a fundraiser and opportunity for people in the community to connect with needed resources and services for people with autism. Steps for Autism is approachable for all abilities, as each participate chooses their pace and distance – even if that’s from the parking lot to the resource fair at registration. Preregister as a team or go solo. FFI: https://sfa2023.causevox.com
Can Do Canines open house
Open house Sat, May 20, noon-2 p.m. at 9440 Science Center Drive, New Hope. Potential clients, volunteers or anyone interested in supporting the organization is invited to attend. Through a self-guided tour, attendees will watch a trainer working with an assistance dog, hear from a volunteer puppy raiser, talk with volunteer staff members, pose questions to client services coordinators about the application process, and meet graduate teams from each of the five types of areas
Can Do Canines trains dogs: hearing, mobility, seizure, diabetes and childhood autism. The assistance dog demonstrations will be held at 12:30, 1:00, and 1:30 p.m., and the puppy raiser will speak at 12:15, 12:45, and 1:15 p.m. No preregistration, though attendees will be asked to share some contact information when arriving.
"Garage Tour" Hosts are sought
Twin Cities dance and theater company
Off-Leash Area is searching for “Garage Tour” hosts for the Seventh Neighborhood Garage Tour. The brand new family-friendly production “A Medicine Show from the 25th Century” will take place in September. The Garage Tour is the company’s performing arts access program where the company transforms typical two-car garages into black box theaters, complete with set, lights, stage, seating and performers to connect with underserved audiences across the Twin Cities metro area, with the overall goal of expanding participation in the arts. A host is a homeowner who has a two-car garage, who loves the performing arts, and thrives on getting people together for a fun community event! OffLeash Area is especially looking for households with a person with disabilities. FFI: 612-724-7372, www.offleasharea.org
Post your event online Access Press would like to move more of its
Central office move
event listings online, and that is possible with our redesigned website. There is a word limit and we ask that those posting information include event costs and accommodations. Are ASL and AD offered? A quiet room? Is there companion seating? Fidgets? Accommodations are much more than a ramp for many of us. That kind of information can help someone decide whether or not to attend an event.
To post an event, go to www.accesspress. org, click the resources tab at top right, and go to the post an event line.
A small web or print ad can also generate interest in an upcoming event. For questions about ads, email firstname.lastname@example.org
Access Press reserved the right to reject events if they do not meet our guidelines. Call the editor at 651-644-2133 ext. one or email email@example.com with events questions.
Open Flow Forum
The Artists with Disabilities Alliance meets via Zoom 7-9 p.m. the first Thu of the month. Upcoming dates are May 4, June 8. 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 Sturdevant. Funding is available for access needs. FFI: 651-294-0907, resources@ springboardforthearts.org
Resources to Enjoy!
The Enjoy listings are for arts events, banquets, fundraisers and fun events by and for disability services organizations. Schedules may be subject to change. Some venues may have mask and vaccine requirements. Please check with a venue or organization before making plans.
The Minnesota Access Alliance (MNAA) provides an Accessible Arts & Culture Calendar for arts patrons who use accessibility accommodations such as audio description, captioning, ASL interpreting and sensory-friendly accommodations. Link to details at https://calendar.mnaccess.org. Be sure to check to find out COVID-19 protocol and if an advance reservation is needed for the accessibility service.
Accessible events can be submitted to the MNAA Calendar (and MinnesotaPlaylist.com).
A list of other venues follows the event listings.
To receive a free monthly events calendar: email firstname.lastname@example.org and/or info@ mnaccess.org. Ask for the entire events list or specific lists for ASL interpreting, captioning, AD, sensory-friendly accommodations or disability-related topics. For other accessibility resources or webinars presented by MNAA, sign up for emails at https://mnaccess.org
The Arc Minnesota has moved to the Griggs Midway Building at University and Fairview avenues in St. Paull. The new street address is 641 Fairview Ave N Suite 195, St Paul. The building has a small parking lot off of Fairview near Charles Avenue and a larger lot accessed from Fairview to the north. The front parking lot has two ADA parking spots. The office has a gender neutral single-stall bathroom, automatic door openers and a dedicated sensory friendly space. FFI: Carson Borgstrom, carsonborgstrom@ arcminnesota.org
Children and families
PACER Center workshops sampling
Many useful free or low-cost workshops and other resources are available for families of children with any disabilities. In-person and online and livestreamed re offered.workshops are offered. Advance registration is required for all workshops. At least 48 hours’ notice is needed for interpretation. 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. Access Press only provides a sampling of the many workshops offered.
Life Planning Series : Part 1 – Special and Supplemental Needs Trusts and ABLE Accounts, 6:30-8 p.m. May 2. Focus on power of attorney, health care directives, maintaining eligibility for government benefits, special and supplemental needs trusts, and ABLE Accounts.
Housing – Starting the Journey : Step Three – What Are the Options? 6:30-9
Apply for 2023-2024 Partners in Policymaking
The free advocacy training course, Partners in Policymaking, is taking applications from Minnesotans with disabilities and parents of young children with developmental disabilities. The nationally recognized leadership training is presented in eight sessions over nine months, starting September 15.
Applications are due on July 14. Applications at bit.ly/partnersapplication
“We help individuals be more effective in advocating for their needs. The result is self-confidence and understanding of disability law and policies ,” said Colleen Wieck, executive director of the Minnesota Governor’s Council on Developmental Disabilities (MNCDD). “As they gain experience in speaking up for people with disabilities, many have become leaders in their own communities.”
National experts lead group participation exercises to emphasize learning. Over the program’s 35-year history, more than 1,100 Minnesotans have become leaders in their own communities. Many have described it as “life changing.” Participants become effective advocates for themselves, their children and others with disabilities.
Sessions cover the history of disability and self-advocacy movements, inclusive education, supported living, and competitive employment. Individuals consider how to influence county, state, and federal legislative processes. The monthly two-day sessions are held on Fridays and Saturdays, from September to May (with no session in December). The March session is on a Sunday and Monday, when participants prepare for and meet with legislators at the capitol.
Costs for the program are covered by a federal grant. Child care and respite allowances are given, and overnight accommodations are provided for those who travel from outside the metro area to attend. Mileage is reimbursed, and meals are provided. Sessions are held at the Crowne Plaza Aire in Bloomington, near Mall of America and the Minneapolis-St. Paul International Airport.
Limited to 35 Minnesotans, participants are selected by a panel of Partners graduates and representatives of MNCDD. The council introduced the Partners in Policymaking program in 1987, and, through expansion to other states and countries, has trained more than 27,000 people worldwide.
“This program is based on the belief that systems change is best brought about through the efforts of those most affected by them, and we seek to arm these individuals with the tools needed to be successful in the public policy arena,” said Wieck.
Those selected to participate in the program must attend all sessions and complete homework assignments. For further information on class expectations, or to get an application form, go to bit.ly/class41website. or contact Brenton Rice at brenton@ togevents.com, or 651-242-6589.
p.m. May 8. Hear a detailed explanation of individualized housing and service options from parents, young adults, and housing providers as they share their journeys through the process.
Life Planning Series : Part 2 – Supported Decision-making and Guardianship is 6:30-8 p.m. May 9. The workshop will address the consideration and purpose of supported decision-making and guardianship, with a focus on the details of the legal procedures and a discussion about both short and long-term planning.
Choosing Reading Tools to Match Reading Material is 4-5 p.m. May 15. Reading can be challenging for many with reading disabilities and visual impairments. Learn how to match reading tools to the type of reading material. Tools include auditory and visual modifications.
Build a Sensory Space: DIY Options to Create a Sensory Room is 2-3:15 p.m. May 10. Learn easy DIY options that can be used to create sensory rooms or spaces. Offered virtually and at PACER Center.
FFI: PACER, 952-838-9000, 800-5372237, www.pacer.org
Info & Assistance
Many classes available
NAMI Minnesota (National Alliance on Mental Illness) has free and in-person online mental health classes. Choices include Hope for Recovery, Transitions, Ending the Silence, Understanding Early Episode Psychosis for Families, In Our Own Voice, Family to Family, Positive Psychology, Creating Caring Communities, smoking cessation, a suicide prevention class called QPR – Question, Persuade and Refer, a special QPR class for Agricultural Communities and many more.
NAMI Minnesota’s Online Support Groups moved to a new and improved platform, HeyPeers. HeyPeers provides a safe, easy to access environment for online support group meetings. The classes and online support groups are designed for family members and caregivers, persons living with a mental illness, service providers, and also the general public. Find a complete listing of these classes and how to join in by going to namimn.org and clicking on “Classes”.
Two AT grants available LiveLife Therapy Solutions and Lighthouse Center for Technology in Bloomington, have two assistive technology grants
available through March 2024. AT for Wellness and Tech for Connectivity are designed to help people who currently receive HCBS waiver services to obtain equipment and connectivity to help them access telehealth and/or for social engagement. Examples include access to online classes, educational programs, work related activities, community engagement, and remote healthcare appointments. Grants can help with purchasing Internet services and equipment that is denied by waiver or cannot be covered, like tablets and computers, to allow people to access telehealth services. Equipment and setup help are also available. FFI: 952-921-8334, email@example.com; https:// livelifetherapysolutions.com/at4w-referrals;
CLASSIFIEDS FOR RENT
METES & BOUNDS MANAGEMENT Company manages the following Section 8 properties in Minnesota. Income and rent restrictions apply
Metes & Bounds is an equal housing opportunity housing company
May 2023 Volume 34, Number 5 Pg 11
Greenwood Wadena 218-631-2575 Mission Oaks Plymouth 763-559-5770 Rustic Creek Two Harbors 218-595-1018 Todd 27 Long Prairie 320-732-6154 Town Square East Grand Forks 218-773-3631 Victory Duluth 218-722-2629 Classified rates: $20 (first 12 words); $1/word beyond 12. Email classified to firstname.lastname@example.org Deadline: 20th of each month. We will email total cost of classified ad. FIND YOUR NEW HOME WITH AT HOME APARTMENTS Call 651-224-1234 or visit AtHomeApartments.com for an apartment or town home Equal Opportunity Housing
Place/The Pines Foley 320-968-7791
SERVICES Toenail Clipping in your home. RN and certified foot care nurse will clip your long, thick, and troublesome toenails. 612-293-5504 or 507-475-1434 East Metro and Minneapolis areas email@example.com
• For adults with qualifying disabilities.
• Over 50 barrier-free apartment communities & homes throughout the Metropolitan Area, Greater Minnesota and the Midwest.
• Locations also available in many other states. Income limits apply.
• Immediate openings in Hibbing, Willmar and Hibbing, Minnesota
• For qualifying senior households age 62 or better.
• Metro & Greater MN locations available. Income limits apply.
• Accessible apartments, available for seniors in these locations.
• Immediate openings in Worthington and Albert Lea, Minnesota
Why Advertise in Access Press?
Access Press is Minnesota’s disability news source, in print and online. Access Press helps you reach thousands of Minnesotans with disabilities, their family members and friends, their organizations and their allies. Access Press is produced by and for people with disabilities.
• 24-hour Assisted Living Services
• Independent Living Services
• Resident Community Setting (Adult Foster Care)
• Eligibility for or selection of ASI services is not required to qualify for housing. ASI services are not available in all locations Services openings. Call
May 2023 Volume 34, Number 5 Pg 12 www.accessiblespace.org Accessible, Affordable Housing Accessible Space, Inc. Call 800-466-7722 TTY/TDD 800-627-3529
Affordable Senior Apartments
Housing with Care*
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print ads Print classified ads Online ads of all types The Access Press Directory Contact firstname.lastname@example.org 651-644-2133 And please thank and patronize our advertisers! TELEHEALTH BIRTH CONTROL. IT’S WHAT WE DO. Same-day and next-day appointments available, and shipping is free. PPNCS.ORG | 1.800.230.PLAN (7526)