ARRM News and Public Relations

5% Campaign Gains Momentum

The 5% Campaign was the focus of two exciting events yesterday, both reinforcing the need for a rate increase for Home and Community Based Services (HCBS) in 2014, and highlighting the important work that direct support professionals do day-in and day-out.

Twitter Q & A with Senator Kent Eken

Senator Kent Eken, the lead author of The 5% Campaign legislation in the Senate and a strong advocate for the disability community, participated in a live question and answer session via Twitter.  The 5% Campaign, supporting organizations, and individuals posed questions about the importance of the campaign, people served by HCBS, and the staff who support them.

When asked if he had any advice for caregivers who go to the Capitol every year to ask legislators for a rate increase and are passed over, Senator Eken responded with thoughtful and motivating feedback. "I know it's frustrating, but it often takes several tries to get things passed at the legislature. Never give up. Don’t give up. Keep advocating. You have friends in the legislature, who really do care." 

View the full conversation on Twitter

Rochester Town Hall Forum

Hiawatha Homes, Cardinal of Minnesota, Home and Community Options, Winona ORC, and the Arc Southeastern Minnesota, hosted a 5% Campaign Town Hall Forum in Rochester. More than one hundred attended, and the gathering included Representative Mike Benson (26B), Representative John Petersburg (24A), Representative Duane Quam (25A) and Representative Steve Drazkowski (21B).

Self-advocates, staff, parents and board members all spoke from the heart and tears were often present. They shared their personal stories about the importance of services, the need for qualified staff, and struggles in retaining staff while offering such low wages. One direct service professional put it best when she said, “To provide quality care, we need quality pay.”

Thank you to everyone who participated in these events. To view photos and media coverage from the Town Hall, please visit The 5% Campaign’s Facebook page.

You can show your support for services for people with disabilities and older adults in Minnesota by signing The 5% Campaign's online petition at http://bit.ly/1bWZxGC.

To find out more about this campaign and upcoming events including The 5% Rally at the Capitol on November 12th, please visit The 5% Campaign page on ARRM’s website or contact Sara Grafstrom.

--Sara Grafstrom, Director of Advocacy and Community Relations

Revolving Staff Bring Challenges in New Ulm

In 1992, when our son was born, the word autism meant little more to us than what was portrayed by actor Dustin Hoffman in the movie “Rain Man”. In spring of 1992, Ben was born and seemed to be a perfectly healthy baby boy. As time went on, it was apparent that he was not developing as expected. There were many sleepless nights trying to comfort a screaming baby. After a few months, he seemed to settle in, but was not progressing developmentally. He did not babble, his reflexes were slow, and he seemed to respond unusually to sensory stimuli (light, sound, touch, etc.). Other developmental milestones were late in coming:  crawling, walking; and talking never came. 

At 2 years and 3 months he was seen by a specialist who diagnosed him with PDD (pervasive developmental disorder) and ASD (autism spectrum disorder). At the time, we were relieved to have a diagnosis, but were unsure about Ben’s future. Would he ever talk? Would he go to school? Would he have relationships? What services might be available for him? Who do we turn to?  Ben was assigned a case manager through the county and in-home services were started.  

That was 19 years ago. Ben is now 21 years old and lives in a 24-hour waiver facility. He still cannot speak and has many challenging behaviors. It has been a long, hard road, but like every other parent, I am very proud of Ben’s accomplishments, many of which would not have been possible without the services he has received over the years and the undying dedication of those who have supported him.

Unfortunately, some of the people that support Ben come and go. The job they do is difficult and the pay they receive does not reflect the enormous responsibility that comes with it. Change is extremely difficult for Ben. And so the cycle begins and continues with staff coming and going, Ben’s behaviors escalating with the staff changes and so on and so on. With additional funding would come stability, predictability, and faces that Ben would not only trust, but could count on to be there for him. All of these things are so incredibly important for Ben to feel safe in his environment and for him to not only continue to live in his community, but to THRIVE there.

I am truly fearful for what Ben’s future would look like without services, and I fear that future is a strong possibility if the people that support him cannot make a living by doing the work.

20 Years of Reflections from a Hibbing Caregiver

As a child, I was around some children who had disabilities. I was curious about them yet concerned at the same time. I wasn't sure why they were different but, even then, wanted to help. Starting when I was a young adult, and continuing for twenty years now, I have had a lot of experience working with this population. I began by teaching Sunday school for individuals with physical and mental disabilities. I later drove the city bus for eight years transporting people to work and various places. And now, in my current position as a DSP I just finished my ninth year.

The individuals I support (who I spend more time with than my own family) are such awesome people. On a daily basis I "teach." I teach living skills such as brushing teeth, preparing and planning nutritional meals, laundry, daily apartment cleaning, socialization skills, safety skills, exercising and much, much more. Some lessons take longer than others, but when it finally registers you can see the excitement in their eyes. My job can be grueling but, in the end, is a very rewarding job. When I take individuals on outings we have such fun together! We sing in the van, stop and take pictures, put our feet in the lake, go on picnics, tell jokes, and laugh our heads off!

DSPs are much needed. We provide an important and valuable service to our clients and the community. We are a friend, a mother, a staff, a nurse, and many more things that our clients need. Our job can be taxing, both mentally and physically, and we need to nurture our own families as well. This job is important to the clients we serve... but it is also my livelihood. I work hard just like many other employed individuals. Personally, I feel that we should have the advantages that other employed people routinely receive, such as COLAs

This story comes from a DSP working for H.O.M.E.S., Inc, located in Hibbing, MN.

We Can't Rely on Luck: Struggling to Find Qualified Employees in Minneapolis

I am a very lucky person. I am lucky to have been raised by amazing parents, to have an education, lucky to have a roof over my head, food on my plate, health insurance, friends and family that I care deeply about, but most of all I am lucky to have a job that I love.

I have been working for Community Involvement Programs (CIP) for almost 4 years now. I started as a direct support professional and have since moved my way up the ranks to my current management position. My job gives me pride in helping others, a sense of purpose in my life, and gives me an opportunity to make real change. Real change not only in people we support’s employment, home life, and relationships, but change to the system that they and their direct support staff, work and live within. This opportunity for real change is why I am writing my story.

Working with adults with disabilities, and their direct support staff, has affected my life positively in more ways than one. Assisting a person with finding his or her first fair-wage, competitive job, discovering a hidden talent or simply having a fun, productive day is so rewarding and proof of the hard-working individuals that are employed at CIP. Supporting my employees with brainstorming and providing them with creative new ways to deal with situations, keeps me going day-to-day.

Our direct support and employment staff go above and beyond the call of duty every single day. Planning free, community-based, informative and educational activities is not an easy task to plan for even one person, none the less 8 people with disabilities every day. Finding and supporting employment, keeping up with paperwork, coordinating transportation and communicating with families and social workers (for caseloads of up to 20 people) isn’t uncommon at CIP, either. These are only a few examples of the high expectations we hold our employees to and they are praised often for doing so.

Merely talking about the amazing work my staff does with friends, family and new acquaintances gives me the encouragement that my team is doing something right; I am very lucky to work with a group of such amazing people. But what if it isn’t just luck? What if it takes a certain type of tenacious person to be passionate, caring and creative on a daily basis? It’s beyond unfair to ask a person to possess and utilize these qualities while not being paid according to, or adjusted by, the massive cost of living increase we have all been subjected to in the recent economy. Luckily enough, we have found a handful people who are willing to do the hard work for the last 5 years without a COLA, and I am grateful for their dedication to our mission.

Unfortunately, I can no longer wait for luck to be on my side. Without a rate increase in 2014, it will be next to impossible to find and sustain this type of hard-working determined, and caring employee. If our staffing suffers, our services will suffer and we will not be able to provide the type of supports we have been for many aspects of the people we supports’ lives. Please consider this plea for a 5% increase in 2014 for the caregivers who support an amazing community of Minnesota citizens on a daily basis. Relying on luck will no longer guide us to the changes we wish to see; only our unwavering determination can lead to action.   

Growing Independence: A story from a self-advocate in Eden Prairie

My name is Debbie. I live in Eden Prairie, in a Hammer apartment, where staff help me when I need it. I feel very happy and excited to live in my own apartment. During the day, I go to Opportunity Partners and work at EPCO, a supported employment site. It is important to me to have a job in the community where I can do quality work.

Staff at Hammer and Opportunity Partners support my needs. They help me to learn from my mistakes, and understand things that are hard for me. They’ve also helped me to take my own meds. I couldn’t do it at first, but now I can! They help me with my finances and teach me to keep track of my money.

My staff protect me in many ways. When something bad happens, they’re always there. They help me be independent. They make sure that even though I have a disability, they look at me as an equal and encourage me to be an advocate for myself. They’re really awesome – they make me smile and make me happy.

Without my staff, I would feel miserable, upset, and sad. I wouldn’t know what to do! Without my staff, I couldn’t achieve my goals, and wouldn’t be able to live on my own or work in the community because they’re the ones who support me.

I want to thank them for many things – for supporting me, helping me, and giving me encouragement when I need it.

All in a Day's Work: Working multiple jobs to make ends meet in Winona

I’ve worked with Home and Community Options for 10 years as a full-time Direct Support Professional. In this role I am a teacher, a barber, a chauffeur, a cook, a housekeeper, a caregiver, a counselor, a friend; in some cases I am the closest thing to family that the individuals I support have. I work with men who have special needs for their care and stability. I have provided support that has allowed these individuals to continue living in their home without having to go to an expensive medical care facility. I am proud of my work and I am deeply committed to the people I serve.

The men I care for have high medical needs and limited communication skills. I need to be perceptive in identifying changes in their status to ensure medical problems are caught early. Sometimes assisting with medical emergencies requires me to work long hours so that I may address all the needs of the people I support. When co-workers call in sick, I’m oftentimes called upon to come in to work on short notice or on my days off.  It is also not uncommon for me to be on my feet for 12 hours or more in a workday. These situations can take a toll on my relationship with my husband, often causing stress and “burnout”.

When I first started, it was very rare for other staff to have second jobs outside of our agency. Over the past few years, I’ve noticed a trend where they are now getting second and third jobs “to make ends meet”. Some are working at other places doing job functions such as cleaning, food service, or assembly work. The work that I do requires a far more extensive set of skills and responsibilities, yet these other jobs are paying more.

My current wages would make it very difficult for me to support myself on my own. The cost of gas, food, and other expenses continue to increase; yet there has not been a cost of living adjustment for a number of years. I would like to be able to enjoy retirement someday. However, all of my earnings will be spent on supporting myself instead of saving for the future, given my current wages.

In order to continue to provide quality services to the individuals supported by Home and Community Options, wages need to be competitive. Something needs to be done to keep health insurance premiums affordable. There needs to be incentive for people to want to work in our leadership positions. I truly value my work and feel that we should get paid in a comparable way to other jobs in the area. The work I do supporting people is important, and I’m hopeful that wages will begin to reflect the value of our role in the lives of our community members.

-Sara, who works in Winona

5% Campaign to Hold Press Conference Tomorrow

ARRM is an active member of The 5% Campaign, a nonpartisan coalition of Minnesotans working to ask state legislators for a 5% rate increase for home and community based services in 2014. The Campaign maintains that life in the community is the first and best option for people with disabilities and older Minnesotans, as well as their families, workers and our state as a whole.

The 5% Campaign will hold a news conference on the steps of Duluth City Hall at 11:30 a.m. on Tuesday, August 13^th, 2013 to kick off the campaign. Press, self-advocates, providers, legislators, families, and the public are invited to attend.

Speakers at the event will include Representative Tom Huntley, Chair of the Health and Human Services Finance Committee. A local direct support professional/caregiver, Jon Nelson from RSI, and a family member from the area will also share their stories.  Speakers will be available before and after the news conference for media interviews.

To add your organization's name in support of “The 5% Campaign” or for more information, please contact Steve Larson at 651-604-8077 or stevel@arcmn.org.

Read the News Release: The 5% Campaign News Conference

"Poverty pay for professional work? Commitment to community: Advocates launch 5% Campaign" (Access Press article)

'Like' The 5% Campaign on Facebook where updates and additional ways to get involved will be posted.

 

Overcoming Grief: Dollywood, Dogs and Technology

Janet Bast has provided exceptional support with heartfelt care for over 21 years. She has done so with talent, humor and creativity for the individuals she serves throughout Hammer. I could fill pages with instances of Janet’s great work, but am going to focus on her work in the past year with one individual.

Suzy* has experienced a particularly difficult year. Not only did she suffer the loss of a long-term and beloved job coach, but she lost her long-term employment. Suzy has already lost her mother, father and her only sister and a cousin with whom she had been very close to moved away during the past year.

Suzy had difficulty processing that she didn’t do anything wrong, that it wasn’t her fault these important people would no longer be in her life. Change and loss is difficult for all of us but Suzy experiences them very keenly and struggles to cope.

It was a heartbreaking situation and one that Janet sought to soften.  Janet arranged  and took Suzy on a vacation to Tennessee. Janet, bargain-minded as she is, found excellent deals but did not compromise on quality. They went to the beautiful Smoky Mountains, drank coffee on the deck in their pajamas and visited Dollywood theme park where they chanced upon a rare performance by Dolly Parton herself. Suzy loved the trip and savored the time away.

Janet assists Suzy with new technology, recently helping her make the switch from a land line to a cell phone. She often e-mails Suzy who becomes thrilled whenever she receives a picture of Janet’s little dog, Chico. She encourages Suzy to e-mail her far away cousin to bridge the miles between them. Janet and Suzy have also spend time mulling over old pictures, allowing Suzy to cherish and revisit memories of those lost family members. They are currently putting together special pictures for a wall collage.   

Janet rallied housemates, staff and friends together to engage Suzy in her favorite activities and help her grieve the losses and realize that her life was still full and meaningful. She made a list of the activities that Suzy loves for others to reference when planning their own activities with her. Janet particularly focused on ensuring that Suzy had dogs in her life. Suzy delights in animals, but particularly enjoys gentle dogs.  

Suzy struggled while Janet was steadfast. Suzy cried while Janet lent her a shoulder. Suzy may have felt abandoned but Janet surrounded her. May we all have a Janet by our side when tough times befall us.

*Name has been changed to respect the individual’s privacy.

Caregivers provide a lifeline for a family in Tyler, MN.

We have two special needs kids that each get 45 hours a week of direct care.

Our oldest is 13, and when we first started to get services he was acting out with some intense behaviors like hitting and breaking things. However, with the intense and dedicated work of DSP's we have worked together, as a team and have learned how to help him.

If it were not for such services our son would have ended up in out-of-home placement. The staff help him organize his day, focus on tasks, and help promote social experiences. Helping him with these skills, among other things, has allowed him to gain independence and the ability to stay at home.

Our youngest is 7 and also receives 45 hours of ILS a week. A year ago, before services started she was really behind in her skills and speech. With DSP's coming into our home and working with her she has made huge improvements. They work with her skills and provide her safe opportunities to work on socializing.

They have been a life line for us, when things have been overly intense they have been a way to get a  break and still keep our kids safe. When my husband had open heart surgery last fall they were there to help keep everyone's days structured.

They have truly been a very key piece in keeping our family together. Many of our kids struggle to "fit 'in  and with the help of DSP's they are given the guidance and tools to feel accepted into the community.

Helping People Advocate for Themselves in Minnetonka

Laura is pictured with her Self-Advocacy and Leadership class following an anti-bullying presentation. She is in the center of the back row.

I am a Direct Support Professional. My official job title is: Learning Options Team Lead at Opportunity Partners-Koch Campus.

I support adults with developmental disabilities in their pursuit to be more independent in the community. I teach life-skill classes, such as Self-Advocacy & Leadership. One of my greatest joys at this job is to teach people with disabilities that they are important, that they have rights, and how to advocate for themselves in all areas of their lives.

We also go to the Capitol when the legislators are in session. I help my class members to write their personal stories, list what they think is important for their legislator to know, and support them in meeting with their legislators.We also attend rallies that support disability rights, as well as attending the MN-CCD “Tuesdays at the Capitol” meetings.

Some of the people I support have mental illness, autism, mental retardation, physical disabilities, and are blind, deaf or cannot speak. Some need me to give them medication or check their blood sugar levels in the community. Some run away from the group in the community. Some have seizures in the community. Some have incontinence accidents in the community. At times, I have been pushed, kicked, sworn at, threatened, inappropriately touched and yelled at. Although these aspects of the job are not the greatest things to deal with, I stay because I truly care about the people I serve, and want to help them to be independent, and learn to advocate for themselves. These challenges are the things that I choose to put behind me as I go forward each day in my goal to support the people I serve.

The thing that is harder to put behind me is the fact that I do not get paid enough to keep working at this job. I was hoping that the 2013 COLA would pass, and all the DSP’s would get a well deserved raise.That did not happen.That is distressing. If the COLA does not pass in 2014, I will not be able to stay at this job. The cost of living keeps increasing, and the DSP’s pay rate does not.

The low pay that I receive as a DSP puts my family in financial distress. I have to weigh the following options: “should I stay at a job that I love with low pay” or “should I leave this job so I can afford the basic necessities of life, and be able to send my children to college, pay my mortgage and bills, and assist my elderly parents whose health is failing.”

Thank you for taking the time to read my story. Please consider passing the 2014 COLA so that the DSP’s who love their work and give quality care to people with disabilities can afford to stay at their jobs, and continue to support people with disabilities in gaining independence and living quality lives.

-Laura, Learning Options Team Lead at Opportunity Partners-Koch Campus