ARRM News and Public Relations

Commentary: Focus greater attention on structural barriers to inclusion for people with disabilities

By Sue Schettle

Published by the Minneapolis Star Tribune on 12/14/2019 (original publication here)

The latest article in the Chaotic Care series (Disabled Minnesotans Often Live in Costly Isolation, 12/08/2019) had the opportunity to continue the series’ constructive look into the current challenges Minnesotans with disabilities face in having the opportunity to live their best lives. Unfortunately, several core issues were glazed over, and some ignored, in exchange for painting a negative picture of group homes where hundreds of Minnesotans in fact do receive the support and services they need for a high quality of life.

Minnesota’s relatively large number of group homes is a manifestation of being one of the first states to close all state institutions housing people with disabilities. Beginning as early as the late 60’s and early 70’s, Minnesota led the nation in a commitment to the community integration of people with intellectual and developmental disabilities. Minnesota closed its institutions, establishing the alternative of group homes as the most individualized and community-based support setting conceived at the time. To this day, Minnesota is one of only 17 states with no state institutions.

However, this history is just for context, because progress never stops. Fifty years ago, the list of options for community-based services was short. Today, group homes are part of a spectrum of residence and support options for people with disabilities. This is a great advancement that offers the potential for people to customize the support they need with the independence they want.

I say potential because as the article calls out, too many still lack access to those opportunities. Yet centralizing group homes as the problem is a disservice to addressing the true factors preventing more people from living their best lives. 

The article failed to address the lack of affordable housing or discriminatory zoning ordinances and tenant policies which limit options even in the most progressive of counties.

It failed to discuss that direct support staff shortages covered in the article affect people in ALL housing situations, not just group homes. Access to stable staff is a key factor in whether a person can have the confidence to live in a more individualized setting.

The article glazed over the central role of counties and case managers in supporting transitions to more individualized homes. As the ultimate administrators of waiver funding, they are not being held accountable for their responsibilities to ensure people can access the most independent setting possible.

In the overwhelming majority of cases, structural barriers like these take the choice and opportunity out of the hands of people with disabilities. 

Finally, the article misleadingly states group homes are more costly than individualized services. Yet the scope of services being provided is drastically different in a group home setting. The majority of people living in group homes require some level of 24-hour support, while people living on their own are utilizing a fraction of that. Making this comparison is like suggesting that the retail store minute clinic is a better health care investment because getting a flu shot there costs less than a hospital stay for pneumonia.

This all boils down to two main points which the article had the chance to make, but instead, overly focused on a handful of negative group home experiences.

First, group homes do not deserve the overall negativity portrayed by this article. While they are not the right home and support setting for some, they are extremely positive options for others and exist on a spectrum of services designed to maximize a person’s independence and avoid more expensive and restrictive care settings.

Second, lack of public awareness, or will, to take action on systemic issues is the root cause of the fact that many who want to live in a different setting and have greater access to their community are not currently receiving that choice. It must be addressed. The services sector is shifting, with significant and growing numbers of programs supporting a variety of living situations for people, from organizations using a combination of innovative tools, above-and-beyond resourcefulness, and in some cases, pure grit. Yet, they are capped in their growth not because there are too many group homes, but by inconsistent county administration and case management, lack of affordable housing stock, and the demographics of those needing support outstripping those providing support by a factor of five to one.

We in the disability service sector have openly and deliberately communicated these concerns to both state officials and the media. Opportunities for Minnesotans with disabilities to live lives based on their abilities will continue to be limited until we as a state stop looking for where we can place the easy blame and start taking responsibility for addressing the real barriers.

Sue Schettle is the CEO of the Association of Residential Resources in Minnesota (ARRM), an association of more than 200 organizations representing the Home and Community-Based Services industry, from intermediate care facilities to individual home support.

LSS-MN CEO Jodi Harpstead Selected To Lead DHS

SAINT PAUL, MINN. – ARRM, an association representing more than 200 direct support providers and associated service providers for people with disabilities in Minnesota, today released this statement from CEO Sue Schettle regarding the selection by Gov. Walz of Lutheran Social Services of Minnesota CEO and ARRM Board Member Jodi Harpstead to be the next commissioner of the Minnesota Department of Human Services:

"I want to congratulate Gov. Walz on such a strong choice to lead the Department of Human Services in Jodi Harpstead. As a leader of one of the largest private-sector human services organizations in Minnesota, Jodi has the breadth of experience to not only return stability to the department, but effectively manage the complex and critical agency. She has the credibility of a leader who has worked with, and improved the lives of, the people she will ultimately serve as commissioner.

"Moreover, Jodi is well positioned to take on the significant challenges which now face Minnesota’s human services systems, with her track record of driving innovative thinking to efficiently allocate resources and achieve the outcomes which matter most to vulnerable populations. Our association looks forward to working with her and her team to address issues like the critical shortage of disability support professionals and continue supporting greater inclusiveness and independence for Minnesotans with disabilities."

The Power of Activism: Tammy Duckworth

Senator. Veteran. Trailblazer.

Who is Tammy Duckworth?

Tammy Duckworth, the Junior Senator from Illinois, is not afraid of change. As a teen, Duckworth's family emigrated from Thailand to Hawaii. She lived there through college, where she attended the University of Hawaii. She went on to earn her Master's degree in International Affairs from The George Washington University and in 2015, she completed her PhD in Human Services at Capella University.

Senator Duckworth faces her challenges head-on and demonstrates her willingness to fight for her beliefs. Tammy Duckworth is:

• The first Thai-American woman to be elected to Congress
• The first woman with a disability to be elected to Congress
• The first female double amputee to be in the Senate
• The first Senator to have a child while serving as a Senator

Suffice it to say, Senator Duckworth is the real deal.

 

Senator Duckworth and her daughters, Maile and Abigail;
Picture from Vogue

 

Serving Her Country

In her mid-twenties, Tammy Duckworth joined the Reserve Officers' Training Corps with the Illinois Army National Guard. She continued her service into her thirties and in 2004, she was deployed to Iraq. She flew as a Blackhawk pilot in Operation Iraqi Freedom. During one of her missions, she was hit by an RPG, resulting in the loss of both her legs and the use of her right arm. For her service, she was made a Major and awarded a Purple Heart.

Her service and battle wounds propelled her into the arena of activism. She quickly became a strong voice in regards to human services. And after her recovery, she made it a goal create a better platform for and elevate the importance of veterans' affairs. 

Entering the Battlefield

In 2006, Tammy Duckworth lost the election for an Illinois Congressional seat. She instead went on to serve at the Illinois Department of Veterans' Affairs. After working there for three years, President Obama appointed her to the position of Assistant Secretary of Veterans Affairs. "At VA, Duckworth coordinated the joint initiative with the US Department of Housing and Urban Development to end Veteran homelessness. She also created the Office of Online Communications to improve the VA's accessibility..."

In 2012, Duckworth ran for Congress again and won, making her the first ever woman with a disability elected to Congress. She served as the Representative for the 8th Congressional District of Illinois from 2013 to 2017. During her service, she strengthened her platform and put forth legislation regarding women's rights, veterans' rights, and accessibility. In 2016, she beat out incumbent, Mark Kirk, making her the Junior Senator of Illinois.

As a Senator, she has taken a firm stance on disability rights. In early 2018, she spoke out against House Resolution 620, which sought to remove certain protections guaranteed in the Americans with Disabilities Act. She stated that passing this legislation would, "send a disgraceful message to Americans with disabilities: their civil rights are not worthy of strong enforcement and they can, once again, be treated like second class citizens." In December of 2018, she introduced legislation to increase accessibility at fitness centers. The goal of the Exercise and Fitness for All Act is to "ensure people with disabilities have the same opportunity to use fitness facilities as their able-bodied peers, and it would allow small businesses to use the Disabled Access Tax Credit to help cover the purchase of accessible exercise equipment." Her dedication to providing a voice for all has dubbed her a trailblazer.

Be More Like Senator Duckworth!

DSP Appreciation Week is just a few weeks away! September 8 - September 14 is your chance to convey how much you value the DSPs in your life.

When talking about her accident, Senator Tammy Duckworth said, "That day, and so many others when I served, illustrated the two most important lessons the military taught me. Never leave anyone behind - not on the battlefield and not in our country."

So, you should...

• Review the 2019 DSP Appreciation Week Toolkit - contribute to our recognition video or request a city proclamation
• Join the Facebook event for DSP Week
• Share your stories and events with us on Facebook, Twitter, and Instagram! Remember to tag them with #DSPRW2019 and #SeeOurDSPs

East Metro Legislators Share Coffee, Ideas With Local Disability Service Advocates

Representatives from East Metro area disability service providers thanked legislators for investing in the direct support workforce

STILLWATER, MINN. – Representatives from several organizations which provide supportive services to people with disabilities in Minnesota’s East Metro area met with local legislators to express the importance of recent investments in their workforce by the State Legislature, and to discuss future ideas for meeting the support and care goals for people seeking greater independence and community inclusion.

Sen. Karin Housley (R-Stillwater), Rep. Linda Runbeck (R-Circle Pines), and Rep. Ami Wazlawik (DFL-White Bear Lake) discuss disability services with provider representatives in Stillwater.

Sen. Karin Housley (R-Stillwater), Rep. Linda Runbeck (R-Circle Pines), and Rep. Ami Wazlawik (DFL-White Bear Lake) sat down Wednesday for coffee with more than a dozen representatives from area service providers at Joseph’s Family Restaurant. They discussed issues ranging from the 17 percent wage gap for Direct Support Professionals (DSPs) to the overall difficulties families face in finding services for their loved ones.

Bill Tiedemann from Hope House of the St. Croix Valley said, “There just aren’t enough services available for those who need it.” Jon Poulson of The Phoenix Residence echoed that statement: “We have over 100 people on a waiting list. And we aren’t the only provider in that situation.”

The discussion made clear the wage gap is just the tip of the iceberg for providers in Minnesota. Although the state passed legislation this year which will invest more in DSP wages, providers will still have trouble recruiting and retaining staff. There are over 75,000 DSPs in Minnesota and the average wage is roughly $13 per hour. “Something needs to change,” said Senator Housley (R-Stillwater).

This coffee event was organized by ARRM, a trade association representing organizations in the home and community-based services industry, as part of an ongoing effort to strengthen communication and effectiveness of the public-private sector relationship which defines services for people with disabilities in Minnesota.

“These critical supports are almost entirely funded through public spending, and yet delivered predominantly by private non-profit and for-profit organizations,” said Sue Schettle, ARRM CEO. “Minnesota has historically been a national leader in the standard of care and supporting greater independence for people with disabilities and regular conversations like this are essential to continuing that leadership.”

Home and community-based service organizations began as an alternative to large, state-run institutions and helped launch a dramatic expansion of the care, support, residential and community engagement opportunities for people with intellectual and developmental disabilities over the last 50 years. Hundreds of organizations operate these programs across the metro Minnesota, supporting several thousand people with disabilities and employing more than 10,000 direct support staff.

The Power of Activism: Ari Ne'eman

CEO. Rights Activist. Self-Advocate.

Who is Ari Ne'eman?

Ari Ne'eman's journey in public service began earlier than most. At the age of 12, Ne'eman was diagnosed with autism, which was rather a shock to his parents. But a diagnosis of any kind didn't mean much to him at that age. It wasn't until he got older that it began to mean something different, something a little scary. In an interview with the Washington Post, Ne'eman said, "People do not talk about welcoming autistic people to their communities. People talk about fear and tragedy and burden." Ari Ne'eman has made it his mission to give a voice to the country's autistic community.

 

Ari Ne'eman, Photo from Wired

 

You Can Make a Difference (Even at 18)

At the age of 18, Ne'eman co-founded the Autistic Self Advocacy Network (ASAN), and served as its President for 10 years. ASAN, a nonprofit, was founded with the goal to encourage advocacy for autism and disability rights. Staff and involved advocates host leadership trainings, informational meetings, and facilitate other educational activities. ASAN's Board is comprised of individuals from across the country who want to encourage acceptance and initiate change when it comes to the view of autism in America.

The Autistic Self Advocacy Network has gone from being a group of students who wanted to make a difference to one of the United States' most prominent disability rights organizations. As its President, Ari was instrumental in this effort. His work attracted hundreds of supporters, enabled self-advocates to speak up for their rights, and encouraged the government to make the United States a more inclusive place to live.

In 2009, Ari was appointed to the National Council on Disability by President Obama. He was confirmed in 2010 and served on the Council until 2015.

Ari Today

Since resigning as the President of the Autistic Self Advocacy Network, Ari has continued to support the autistic community and create innovative solutions to complex problems. In 2018, he founded the platform MySupport. The goal of MySupport is to match those who want or require support needs with a support worker. The matches are made based on compatible personalities and allows for trust to be made before a support worker enters your home.

He currently serves as the CEO for MySupport, consults for the ACLU, and advises various civil rights and disability advocacy organizations.

"My saving grace was connecting with other autistic adults and finding out that there was this larger community of autistic people who weren't willing to just passively accept how the world defines us."

Be More Like Ari!

The 2019 legislative session might be over, but now is the time to get in on the action!

Do you want to thank your legislators for their work this session? Are you ready to look to the future? Then join ARRM staff and attend our Coffee with Legislators event series! These coffee events will be held in: Blue Earth, Eden Prairie, Stillwater, Saint Cloud, Minneapolis, and Duluth. If you live/work in one of those areas or have a loved one in one of those areas, come out and make your voice heard.

Also, visit www.arrm.org/thanks for digital tools to say thanks. Help us advocate for the disability services workforce. Ari never stops advocating and neither should you!

 

The Power of Activism: Elena Hung

Lawyer. Mother. Lobbyist.

Who is Elena Hung?

Elena Hung is a woman who was destined for public service. After her graduation from Northeastern University School of Law, she moved to Washington DC for work. Beginning in 2006, she began practicing immigration law, focusing on reuniting families and encouraging sponsorship for workers. However, this focus shifted several years later and she became an "accidental activist". In 2014, Elena had her daughter, Xiomara, which means "ready for battle". She was born with Tracheobronchomalacia, a condition that causes the trachea to collapse when one breathes. Xiomara was hospitalized for the first five months of her life and now at age 5, requires a tracheostomy tube, ventilator, feeding tube, and medical stroller. Although she enjoys the same activities as any other child, Xiomara needs far more medical care and attention. In 2017, Elena and close friend, Michelle Morrison, were casually discussing their concerns for children with complex medical needs. Both women were worried about cuts to programs such as Medicaid and the Individuals with Disabilities Education Act. It was this conversation that led to the creation of Little Lobbyists.

Elena and Xiomara, Photo from Little Lobbyists

A "Little" Bit of Activism

Elena, Michelle, and others with children who have complex medical needs began meeting frequently. In June of 2017, the group took their first trip to Capitol Hill. They hand-delivered letters, photographs, and literature to legislators, hoping for a positive response. The group quickly realized that much more needed to be done. Since that initial visit, the Little Lobbyists have frequently returned to the Hill to talk to legislators and discuss their mission. The group consistently encourages those from across the country to submit stories and photos to bolster their message. All submissions are personally delivered to elected officials by members of the Little Lobbyists.

Now in 2019, the Little Lobbyists can often be spotted on the Hill. They hold educational workshops and rallies, protest in front of the Capitol, and continue to hand-deliver letters of personal stories to legislators. On the group's "Our Story" page, the aim is clear. "Our goal is for the United States to become a place where the government does not repeal, but rather advances and champions, policies and laws that protect the livelihood and future of our children."

Elena Today

Elena Hung, although still a practicing lawyer, has become a champion advocate for inclusivity and accessibility. Her mantra is that all people, regardless of ability, should have the same rights. Elena is the current President of Little Lobbyists and the Co-Chair of Health Care Voter. She also guest writes for the Huffington Post. In 2018, she won the Speak Up for Health Award from The Center for Consumer Engagement in Health Innovation. Her belief in the power of personal stories gives hope to all who advocate for health care and disability rights.

From this, it is evident that many of the best advocates are parents. Elena and her Little Lobbyists are always ready for battle.

Sponsored content: visit Dose Health for more information

Be More Like Elena!

With the legislative session coming to a close, now is the time to speak up. Conference Committee members were just announced. Those members are Senators Benson, Abeler, Jensen, Utke, and Marty and Representatives Liebling, Moran, Schultz, Halverson, and Hamilton. If any of these legislators represent your home district, please read the action alert that went out this morning from the Best Life Alliance and reach out to them.

Share your story and state why the inclusion of a Competitive Workforce Factor for disability services is important to you. As Elena has said, personal stories have great power and you should share your's.

The Power of Activism: Anita Cameron

Community Organizer. Protester. Promoter of Social Change.

Who is Anita Cameron?

Anita Cameron has been involved in community organizing for over thirty years. She began her career working for the Chicago Transit Authority as a Transit Information Agent. In this position, she experienced firsthand how transportation issues affect members of the disability community. She saw the accessibility issues and the lack of accommodations, and she noticed those issues were dissuading individuals from taking public transit. Her job at the Chicago Transit Authority kick-started her career as an activist.

Anita Cameron, Photo from the Disability
Visibility Project

Transportation Accessibility Activism Spreads

After Anita realized there was a problem with Chicago transit access, she posited there were problems with public transportation systems in other U.S. cities. She went on to work with individuals in multiple states to address transportation issues. In Indiana, she assisted in training facilitation for riders with disabilities. She has since served on committees in New York, Colorado, and Washington D.C. regarding transportation accessibility for individuals with disabilities. She even worked with the American Association of People with Disabilities on "Get Out The Vote" efforts and went on to work in other fields of activism.

Encouraging Social Change for People with Disabilities

In 1986, Anita joined ADAPT, a grassroots disability rights organization. Members of ADAPT participate in civil disobedience and nonviolent action to bring awareness to the issues faced by the disability community. Anita has been a member for thirty-three years and has participated in numerous demonstrations, for some of which she chained herself to the gates of the White House.

Anita Cameron's work is a reminder that we can all do more to better the world for all people. For more information about Anita, check out her personal blog biography and this feature on ADAPT's website.

Be More Like Anita!

Minnesota has many grassroots groups and resources for individuals who want to become more involved in advocating for disability rights. The Arc Minnesota has many great resources listed on their website. Their Public Policy page outlines how you can take action and lists other information about the current legislative session.

The Best Life Alliance is a coalition comprised of over 130 organizations and individuals. It was founded in 2014 and aims to advocate for home and community-based services in the state of Minnesota. You can find information about the Best Life Alliance and how to get involved on this page.

A Valentine's Day Story With Meaning

It's important for those of us who support people with disabilities or advocate on their behalf fully embrace all aspects of community integration and independence that an individual may aspire to. Around Valentine's Day, an appropriate aspect of this to highlight is ensuring people have the opportunities and support to find partners and build safe, loving relationships, and to build those relationships to their fullest potential. The following story was provided by Residential Services, Inc. (RSI) and highlights both the challenges people with disabilities can face in engaging in relationships, but how their successful union not only enhances their lives but also reduces their need for staff support.

Married, but not together

When Jim and Mardell first got married, Jim was living at RSI’s Oregon Creek home and Mardell was receiving services from a different provider in Duluth. Their married relationship started with brief visits for an hour or two, then to visits a few times a week, to overnight visits once or twice a week, to weekend stays. Sharing a home was always their dream. It wasn’t always easy for Mardell, Jim, and their support teams because they lived in different homes owned by different providers and had their own unique medical and emotional needs, but they never lost focus of their ultimate goal. They continuously pushed to increase their independence and build skills so when the time came, they would be ready to support each other.

Thanks to their ability to self-advocate and work with RSI administrators and their support teams, they achieved that goal.

Overcoming barriers, building skills

Moving in together came with barriers and some unique challenges, but now Jim and Mardell share a living space and spend as much time together as they would like (which is a lot!).

Matt Koski, RSI Program Coordinator, says “I am so happy that they are able to fulfill their dreams and be there for one another on a daily basis. They never stopped believing in the process and their love for one another and I firmly believe it's what made this whole transition possible. They put in the hard work and we followed to where they pointed us.”

Together and supporting each other

Now that Mardell and Jim are living together, Mardell is able to assist in caring for her husband, which brings her joy and strengthens the connection they share. They also enjoy playing card games at home, movie nights, and shopping together. 

“We both struggle with mental illness, and it’s like we’re just so good for each other," says Mardell. "There’s purpose in my life. I’ve got something I can look forward to every day, waking up and making my husband’s day the best I can make it.”

We should all be so lucky.

Governor Dayton Proclaims DSP Recognition Week in Minnesota

NEWS RELEASE

Governor Mark Dayton has proclaimed September 10 – September 16 Direct Support Professional (DSP) Recognition Week in Minnesota.

The week is an annual national celebration of the tremendous contributions DSPs make to the people they care for and their broader communities. Governor Dayton has issued the official proclamation in consecutive years. This years’ proclamation highlights the essential role DSPs play in supporting people with disabilities in their pursuit of their best lives.

“Direct support professionals help individuals with disabilities live meaningful, productive lives and make it possible for them to live successfully in their communities and avoid costly institutional care,” states the proclamation.

Organizations across Minnesota are holding appreciation events and celebrations to honor and thank the staff that provide a wide array of service and care to people, from daily hygiene to daily health care. Due to an increasing demographic shortage of care givers, these talented and dedicated professionals are in increasingly short supply, making the need to recognize their work and advocate for fair and competitive wages all the more important.

Those looking to express their thanks can join the national conversation by using the social media hashtag #DSP2017. The proclamation can be viewed on ARRM’s website.

 

How are you recognizing DSPs during #DSP2017? Tell us in the comments below, or recognize a DSP or DSP team you work with.

 

Check out more news from ARRM.

Media Contact: Drew Henry | [email protected] | 651-291-1086 x. 4

Rochester-area Disability Service Proivders Highlight Staffing Crisis

Eight Rochester-area organizations that provide a range of support and services to people with disabilities in Southeast Minnesota held a press conference to call attention to the growing problem of direct care staff recruitment and retention. The group included Hiawatha Homes, Bear Creek Services, Winghouse, PossAbilities, ARSYS, Cardinal of Minnesota, Ability Building Center, and the Arc of Southeastern Minnesota. Each organization highlighted how the shortages are affecting their current employees and more importantly, the people they support.

'In A Fight For Our Lives' - Rochester Post-Bulletin

Providers, parents and people who receive services at a press conference highlighting the growing direct care staffing shortage for people with disabilities (Photo credit: Rochester Post-Bulletin)

According to the coverage in the Rochester Post-Bulletin, the group highlighted the big reason for the challenges: static starting hourly wages ranging from $11 to $12.07. Employees at agencies like these are paid through Medicaid funding controlled by the state. Best Life Alliance, a state coalition of organizations and individuals that work with people with physical and/or mental disabilities, is asking the state approve a 4 percent wage increase in 2017 and another in 2018 to help them recruit and retain employees.

Disability services workforce shortage reaches "crisis proportions" - KIMT-TV

The spokespeople for the providers also highlighted how the issues they face are shared across Minnesota, and the country. Coverage from KIMT Channel 3 News shared how legislated pay increases have not kept up with the rising costs over the past decade. Because of low wages there are more than 8,700 open care giver and staff jobs in the state.

 

Many of the local providers at the press conference say there is a strain on overworked staff trying to make up for open positions that providers are struggling to fill and retain. The turnover rates at these local organizations, and others around the state, are high, and this hurts the people who rely on direct care staff for support.

The event was also covered by KAAL-TV and FOX47-TV.