ARRM News and Public Relations

Best Life Alliance Launches Ahead

It was an action-packed week for the Best Life Alliance, formerly known as The 5% Campaign. The coalition publicly switched on its new name and logo on Monday and officially transitioned from a one-time campaign to a ongoing Home & Community-Based Services coalition. 

On Tuesday morning Best Life Alliance held its very first press conference at the State Office Building.  Parent Pam Gonnella, DSP Sam Subah, LSS CEO Jodi Harpstead, chief Senate author Kent Eken, and House HHS Finance Committee Chair Rep. Matt Dean  spoke. The legislators noted there is already strong bipartisan support of a 5% rate increase for Home & Community-Based Services in 2016 to address the workforce crisis.  "The 5% rate increase is not just about numbers, it's about providing a better quality of life," Sen. Eken told reporters. (The chief author in the House will again be Rep. Rod Hamilton.)

Media present included Don Davis of Forum, Tim Pugmire of MPR, videographers from TPT and KSTP, Patrick Coolican from the Star Tribune, Tim Benjamin and Jane McClure from Access Press, and Jo Erbes from Disability Viewpoints. There were also many supporters who lingered after the conference to record short personal videos for the coalition's social media. 

Yesterday, the initial state budget forecast was released and it showed a $1.9 billion surplus. After a third is moved to the budget reserve as required, distribution of the remaining $1.2 billion will be up for debate. Several media stories following the forecast announcement mentioned the Best Life Alliance five percent rate increase among the priorities being considered for spending the surplus dollars. ARRM CEO Bruce Nelson was quoted in the Pioneer Press article.

The surplus is good news for the Best Life Alliance, but there are many other groups, and state needs like transportation, vying for these dollars. We need to continue to build on our strong, broad coalition of supporters to make sure that community-based services are priority for policymakers before session even begins on March 8th.

Ways to stay updated and support the coalition:

• Follow Best Life Alliance on Twitter @BestLifeMN and on Facebook. Like and share coalition posts and use the new hashtag #BestLife4All in your related posts going forward.  
• View the latest news (including recent coverage of the press conference/budget forecast) by visiting the Best Life Alliance news & media webpage.
• Email me to join the Best Life Alliance email list.
• Spread the word about Best Life Alliance advocacy efforts via social media, on your website
• Add a line noting your support of the Best Life Alliance (with a link) in your email signature.
• Contact your legislators and Governor Dayton

--Amy Wartick, Communications Director

Attend a Fall Town Hall- Share Your Story

Many organizations from the disability community will be holding town hall forums this fall as a way to provide advocates with the opportunity to voice their priorities to their local legislators. If disability issues matter to you, we encourage you to attend an event.

Historically, town hall forums provide staff, family members, and self-advocates an opportunity to educate their legislators about what is important in their community. Legislators often times will use these first hand stories when legislating in St. Paul.

Events are being held across the state. ARRM's new Town Hall Google Calendar is available to help you track these forums. More information including exact locations and legislators invited can be found on the calendar. Individual forums that legislators will be holding will also be added to the calendar as they are announced, so make sure to check the calendar frequently.

Upcoming dates and locations include the following free events that are open to the public.

Town Hall Forums hosted by the Brain Injury Alliance & Minnesota Stroke Association

Attend these empowering and educational events dedicated to sharing personal stories and concerns about brain injury and other disabilities with local legislators. 

View event flyer

• Coon Rapids: Tuesday, October 13 from 6:00 -8:00
• Willmar: Thursday, October 15 from 6:00-7:00
• Burnsville: Monday, October 26 from 6:00 -8:00
• Rochester: Thursday, November 5, from 6:00 - 8:00
• St. Paul: Wednesday, November 11 from 4:00 -6:00
• Saint Cloud: Tuesday, November 17 from 6:00 -8:00
• Minneapolis: Saturday, December 5 from 2:00 -4:00

Disability Policy Summits hosted by MN-CCD    

 

 

 

 

Learn about critical issues including MA Reform, The 5% Campaign, and other policy initiatives to advance disability services in Minnesota. Each summit will feature a town hall so that legislators can hear directly from their constituents.

View event flyer

• Plymouth: Saturday, November 7, from 10:00 - 1:00
• Baxter: Saturday, November 14, from 10:00- 1:00
• Stillwater: Saturday, November 21, from 10:00-1:00

Your story is important, we hope you will be able to attend one of these important events.

--Sara Grafstrom, Director of Advocacy and Community Relations

Senator Kent Eken Receives 2015 ARRM Leadership Award

ARRM honored Senator Kent Eken (04) with its 2015 Leadership Award on Thursday, September 24, 2015.  The ceremony took place during the ARRM Leadership Conference in Deerwood, Minnesota and recognized Senator Eken for his ongoing dedication to supporting people with disabilities across the state.

The award was founded over a decade ago to recognize innovative leaders whose advocacy has significantly impacted Minnesotans with disabilities. Recent recipients include Steve Larson of Arc Minnesota, Senator John Hoffman and Representative Jim Abeler.

ARRM CEO Bruce Nelson presented the award and commended Senator Eken for his strategic legislative efforts including rate reform and authorship of The 5% Campaign’s senate bills in 2014 and 2015. Sen. Eken's strong advocacy was instrumental in securing a five percent rate increase for Home and Community-Based Services in 2014; these essential services support more than 90,000 people with disabilities and older adults in Minnesota. The bill helped address a crisis, with the bulk of the funds going to underpaid direct care workers. 

In his acceptance speech to over 220 disability service leaders Senator Eken shared, “I got involved in politics to make a positive difference in the lives of others. Strong unity is so vital to our success.”  

He urged disability providers in attendance to continue advocating for needed reform and funding by telling their personal stories to legislators and Governor Dayton during the 2016 session. He also emphasized the importance of engaging family members in grassroots efforts. “A lot of people don't realize the severity of the workforce crisis we are in,” he noted. “Surpluses give us the opportunity to make up for cuts to Home and Community-Based service in the past.”

--Amy Wartick, Communications Director

Going to the Fair? Make sure to visit your legislators!

Today marks the official kick-off of the Minnesota State Fair!

As in previous years, members of the state legislature will be present to hear from fair-goers about their priorities for the upcoming legislative session. If you are planning on attending the fair, we urge you to stop by the House of Representatives and the Senate fair booths, located in the Education Building. Ask legislators to prioritize a rate increase for people with disabilities served by Home & Community Based Services in 2016.

Schedule of Representatives at the Fair
Schedule of Senators at the Fair

While you are in the Education Building, we would also like to encourage you to visit the Minnesota State Council on Disability booth. This year, MSCOD is dedicating their booth to celebrating the 25th Anniversary of the Americans with Disabilities Act. Musicians and artists will be present in the booth and you can pick up a free poster celebrating the ADA.

Also located at MSCOD’s booth is the MN-CCD button display. To celebrate the 25th Anniversary of the ADA the MN-CCD held a button contest, asking participants to illustrate what the ADA means to them. Three winners were selected and made into buttons, and all the contest entries can be viewed on a poster at the MSCOD booth.

We hope everyone has a fun time at the Fair!

Photo credit: Minnesota State Fair

Opportunity Partners' End-of-Session Celebration honors legislators, advocates

On Wednesday, May 27^th, ARRM member Opportunity Partners held their annual ‘End-of-Session’ celebration in Minnetonka.  60 people gathered to recognize the outstanding advocacy efforts of staff,  self-advocates, community partners, and legislative champions. 

‘Advocate of the Year’ awards were presented to David Gaarder and Scott May. David is an instructor of Opportunity Partners’ professional cleaning program and a 2015 ARRM Cares Award winner who instills the values of hard work, integrity and self-confidence in his students. Scott is a strong self-advocate enrolled in the cleaning program. Together they inspired a crowd of 1,000 by speaking in support of The 5% Campaign at the ARRM/MOHR Day at the Capitol rally in March. In addition, they shared advocacy messages on May's episode of CTV's Disability Viewpoints.

Disability champions Senator John Hoffman and Representative Nick Zerwas were also honored with letters of appreciation at the celebration. Their leadership on many disability policy priorities this session included the Minnesota ABLE Act and Medical Assistance Reform. Representative Paul Rosenthal also attended the event.

--Alicia Munson, Opportunity Partners and Amy Wartick, Communications Director

Outcomes from the 2015 Legislative Session

Minnesota’s 2015 Legislative session concluded with many victories and one major disappointment for the disability community.  Below is a brief results summary of a few key accomplishments that passed and were signed into law by Governor Dayton.  These include important initiatives championed by ARRM, MN-CCD, ARC and other organizations.

While The 5% Campaign was unsuccessful in securing a rate increase for Home and Community Based-Services and ICFs/DD this year, its thousands of strong supporters did raise awareness of the need and position HCBS for an increase in 2016. (If you missed it, view Hammer's video covering the 5% rally in March.)

Leaders from The 5% Campaign are already planning for the 2016 session. The job is not done yet, and ARRM is counting on its supporters to lend their voices to the cause this summer, fall and into the next year.

Note: ARRM trainings this summer and fall will cover the latest legislative changes and their upshots in depth.  Details will be posted on our Training & Event Calendar as  soon as they are available.

Adopted legislation championed by ARRM:

• Disability Waiver Rate Setting (DWRS): Provisions negotiated by the DWRS Coalition, DHS, counties and other stakeholders were adopted in the HHS Omnibus Finance Bill that Governor Dayton signed into law on May 22^nd. Changes in the areas of underspending, banding, trainings for counties, staffing ratios, transportation and the exception process were all included.
• Investigations and Sanctions: ARRM introduced a bill to address changes in the severity of licensing sanctions and to align Statues 245A and 245D. Many of the issues presented in the bill ARRM introduced have been resolved administratively between ARRM and the Office of Inspector General, however two provisions that required legislative remedies were adopted in the HHS Omnibus Bill.
• 245A and 245D Reforms: Over the past two years ARRM negotiated a number of needed changes in both 245A and 245D with many stakeholders- and ultimately with several legislators.

Other notable accomplishments for the disability community this year include:

• Medical Assistance Spend-Down: The MA excess income standard (spend down) was changed from 75 percent of the Federal Poverty Guideline to 80 percent, effective July 1, 2016.
• Medical Assistance for Employed Persons with Disabilities (MA-EPD): The legislature repealed the Medical Assistance for Employed Persons with Disabilities (MA-EPD) premium increase that took effect in 2014.
• ABLE Act: $105,000 in funding for ABLE (Achieving a Better Life Experience) accounts was adopted. The plan encourages savings to support individuals with disabilities to maintain health, quality of life and independence.
• State Quality Council Funding: The Council had been operating without an appropriation and this session was allocated $1.2 million for the next biennium, plus additional federal money.

ARRM Members can visit our Daily Dispatch Blog for a more detailed account of important legislation (led by ARRM and others) impacting the disability community this session.

--Sara Grafstrom, Director of Advocacy and Community Relations

The implications of funding, or not funding, an ongoing rate increase

By Jon Nelson, Executive Director, Residential Services, Inc. (RSI)

I want to address the workforce crisis from a provider’s perspective and talk about the
implications of the legislature funding, or not funding, an ongoing rate increase for Home & Community-Based Services.

RSI is a private nonprofit organization supporting people with physical and cognitive disabilities and mental illness in reaching their fullest potential in whatever residential setting they choose to live. We serve the Duluth, North Branch and Iron Range areas.

RSI currently has an eleven percent employee vacancy rate. This is after we have invested in and implemented a number of human resource initiatives to address recruitment and retention; including larger referral bonuses, use of social media, billboards, on-site job fairs, and retention bonuses. Despite our best efforts we currently have 47 open positions.

RSI’s experience is not unique. I have heard from several providers who have larger vacancy rates, some over 20%. It is not an exaggeration to call the situation a work force crisis. The legislature has to do something to provide a rate increase to allow providers to increase wages in order to compete for employees when we have a shrinking workforce.

The workforce crisis already has had a significant impact on services for people with disabilities and older adults. I know of people who have had to leave their home because of not being able to recruit and retain people to provide services. Existing employees have to work long hours of overtime to fill vacant shifts. This is not good for staff retention and can compromise the care being provided when employees are overworked.

The workforce crisis arrived at a time when the State of Minnesota, through its Olmstead plan, is tasked with insuring people can receive person-centered services integrated in the community in less restrictive settings. To implement the Olmstead plan will require a larger and better trained workforce. Without it, the quality and availability of services will decrease and people will be forced to move to more institutional settings that can operate with lower staff ratios.

This is the challenge of our times – to figure out how we are going to care for all of us, including people with disabilities, as we age and need services. The number of older adults and people with disabilities is growing due to increased life expectancy and better health care. For example, people with Down’s syndrome have seen their life expectancy go up by 35 years since 1983. The data tells us the workforce crisis is only going to get worse.

If the legislature fails to address the need it will mean work force problems will grow more quickly and future solutions will be more costly. Providers are working with consumers, advocates, and DHS to find additional ways to address the crisis. This includes use of technology, increased use of unpaid natural supports, and an evaluation of the cost for the level of risk aversion built into the current system. These efforts will only be part of the solution. Compensation for caregivers is the most immediate concern and, if not addressed, will make these other efforts much less effective.

I hope the legislature will find a way to fund a sustainable rate increase to support a sustainable workforce.

Staying with this job has come with many sacrifices

Lynn, at left, with Wingspan COO Therese Davis

In 1998 I discovered a wonderful thing called a group home.  I was hired on the spot at $8.87 an hour. I knew it was something special and that those beautiful people with disabilities needed people like me. I was 25 years old, recently married, had just bought a home and dreamed of having a large family.

It’s 2015 and I am proud to say I still work full time at Wingspan. I love going to my job everyday but, unfortunately, staying with this job has come with many sacrifices. 17 years later, I make just $4.30 cents more an hour. I've always known this line of work would never bring me wealth or even financial stability but I persevered through it because I'm very proud of what I do and, I've held on to the belief that money is not everything.

I wanted a large family but struggled with the fact that a second child will bring me down to the poverty level. I could have gotten free medical and food stamps from the state but instead I pay $415 a month for medical premiums I pay $625 a month for rent and a minimum of $160 for gasoline, and I have lost my home. This leaves me about $115 a week to spend on groceries and other expenses.

The many times over the years that I have heard there will not be another increase or that we will sustain cuts, I’ve wondered if the people who make those decisions realize what our families have had to give up. It turned out that THEY DID!  Last year we received a 5% increase. I am so very grateful and it felt wonderful to be heard and recognized for our work. Because of our increase last year, I am being paid about $100.00 more a month and that contributes greatly to my son’s school lunches for the year.

You cannot see the product our company makes because what we create shows on the inside. I'm a better person because of the care I give to others and my son will without a doubt be a better man having been exposed to the beautiful people I support.

As thankful as we are, the need is still critical for us, caregivers, because the world keeps turning and the cost of living will always be increasing. We struggle to support ourselves and our children. So we are here again, asking for your support. Our work is complex, rewarding but often stressful. We hold the well-being of vulnerable people in our hands. We persevere because we love our work.

I often wonder If I could go back to talk to the 25 year old me would have recommend this line of work to her? I honestly cannot answer that question.

-Lynn Jensen, a dedicated caregiver who works in Minneapolis

Why 5% Matters: Tom's Story

ABOUT ME & THE CHALLENGES I FACE:

My name is Tom and I am 74 years old. I live in the Jorgensen house - an Opportunity Partners group home in Minneapolis.

Throughout the day there are many different challenges I face: doing laundry, taking my hearing aids in and out, using my mouth guard, cooking, and sometimes making sure that I am wearing clean clothes.


HOW CAREGIVERS HELP ME:

My support staff assist me with many daily and weekly tasks. These tasks include weekly budgeting and visits to the bank, cooking, shopping, and helping me live more independently.


IF MY SERVICES WEREN'T AVAILABLE:

If I were no longer receiving services through Opportunity Partners I would not be able to go to my day program at Partnership Resources where I work a recycling job, take art classes and have opportunities to volunteer for my community. I would also miss out on a lot of my favorite afternoon activities such as going to the coffee shop, the grocery store, and trips to the mall.

---

ARRM is an active supporter of The 5% Campaign (HF 564 and SF 647), a nonpartisan coalition advocating for a 5% rate increase for Home & Community-Based Services for people with disabilities, older adults and 90,000 caregivers in Minnesota. The proposal will help Minnesotans who depend on these services to stay independent and lead meaningful lives. It will also allow providers to recruit and retain caregivers- crucial to ensuring quality care.  View fact sheet

We hope you will join ARRM in supporting this important legislation. Visit The 5% Campaign webpage for campaign resources and to find out how you can take action.  If you have questions or would like to become more involved, please contact Sara Grafstrom, Director of Advocacy and Community Relations.

Over 1,000 advocates flock to St. Paul for ARRM/MOHR Day at the Capitol

Yesterday over 1,000 self-advocates, caregivers, family members, and other disability advocates from across Minnesota gathered in St. Paul for ARRM/MOHR Day at the Capitol.

Advocates rallied for a 5% rate increase to support consistent, quality services for people with disabilities at the St. Paul Armory in the morning. The rally featured performances by the Lifeworks Choir and speakers from the disability community. Mike Burke of MOHR kicked things off, and host Bruce Nelson of ARRM led the crowd in an enthusiastic chant of "5% thank you, 5% please". 

Legslative speakers included new and long-time champions for people with disabilities: Rep. Laurie Halverson (51B), Rep. Jerry Newton (37A), Rep. Nels Pierson (26B), Rep. Matt Dean (38B), Sen. John Hoffman (36), Sen. Kent Eken (04), Sen. David Senjem (25) and Sen. Carla Nelson (26).   "You're the ones putting a face on the issue, so keep telling you stories," urged chief 5% Senate bill author Kent Eken.

Parent advocate Pam Gonnella (pictured above ) spoke candidly about the overwhelming task of caring for her daughter after she suffered severe brain damage following an infection at just 5 years old.  "We needed help" she shared. "Our family could not have survived without PCAs and caregivers. We need these critical rate increases to keep these essential caregivers, and to assure that more will want to work in this field in the future."

Caregiver and teacher David Gaardner spoke with Scott - his student and a strong self-advocate.  Scott (shown speaking at the podium) explained that caregivers have helped him to live in his own apartment, take part in a daytime program where he develops life and work skills, and take a job skills training course with David.

Following the rally, advocates spent the afternoon meeting with over 160 legislators. They shared their personal stories with policymakers and asked them to support a 5% rate increase in 2015 and 2016 to ensure high quality services for people with disabilities and older adults.

Looking ahead, ARRM is eager to build off of the energy created during this Day at the Capitol and carry it into the final two months of the legislative session. We would like to thank everyone who made it to the State Capitol and encourage you to keep contacting your legislators to ensure that people with disabilities are a priority during the 2015 legislative session.

View our Facebook album for more photos from Day at the Capitol, and visit The 5% Campaign webpage for more information.

--Sara Grafstrom, Director of Advocacy and Community Relations