Frontline Initiative The Changing Roles of the Direct Support Professional

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Logos for: NADSP, RTC-CL, UMN

Frontline Notes

“Do not believe you will reach your new destination without leaving the shore.”
~ Chinese Proverb

In this issue, we recognize the changing role of the Direct Support Professional (DSP). We highlight public policies that can support your changing role, and ways that you support brighter futures. We focus on the successes of self-advocates, DSPs, and others who have taken and are taking action to improve quality of life for those they support through implementing person-centered practices and advocating for needed change. We hope these stories inspire you in the crucial work you do.

Sometimes, changes in policy are overlooked or ignored by those with the “wait and see” philosophy. Policy changes may not seem to affect our day-to-day work. But there are many policies that directly and significantly affect DSPs and the people you support. Authors in this edition walk us through some of these policy shifts and their importance for our direct support work. The Medicaid Home and Community Based Services Settings Rule defines community based supports for waivered services funded by Medicaid. It prioritizes community inclusion, choice, and individualized supports. State Employment First policies and the Workforce Innovation and Opportunity Act (WIOA) are similarly meant to prioritize opportunities for people with disabilities to get and keep jobs in the community. Managed care policies implemented in some states may also provide opportunities for innovation and recognition for competent and efficient DSPs. Knowing about these policies is important for your practice. Knowledge helps you know how to advocate with the people you support and the profession. These policies can support person-centered practices. Authors provide us with practical tips and suggestions on getting started and moving forward. In some cases, DSPs may need to advocate for new practices that better align with person-centered values.

Advocacy is an important competency area for DSPs, “The Direct Support Professional should be knowledgeable about the diverse challenges facing participants . . . and should be able to identify and use effective advocacy strategies to overcome such challenges” (https://www.nadsp.org/competency-areas-text/). This issue also includes stories about advocacy in action. Here you’ll read stories from people who are standing up for themselves, others, and the profession of direct support. Cliff Poetz, Cheryl Dougan, and Morgan Ryan tell their stories of focusing their energies on building new futures. They call upon you to do the same. We hope you learn from their stories, and are inspired to continue in advocacy work.

This issue also provides stories of ways that people have organized to impact direct support on a state or local level. The #Bfair2DirectCare campaign has called DSPs in New York to advocate for fair wages. The voice of DSPs as well as other coordinated efforts have worked in concert to secure an increased DSP wage and improve the professional image of DSPs. Other states, including Pennsylvania (https://www.fixthedspcrisis.com/), Oregon (http://oregonresource.org/value-the-work.html), and California (http://www.lantermancoalition.org/) are using campaigns to increase wages and the quality of life for people receiving supports, and the profession of direct support. In Tennessee, Rick Rader has worked with law enforcement. He has provided training in crisis response to better attend to the needs of people with disabilities. The role of the DSP is changing. It is continuing to change to ensure people have good lives in their communities of choice. We have important work to do.

The Editors

Frontline Initiative • Volume 15, number 1 • 2018

A publication of the National Alliance for Direct Support Professionals

Editors: Julie Kramme and Chet Tschetter

Graphic design: Connie Burkhart

Web developers: Shawn Lawler, Jonathon Walz

Editorial board: Tony Anderson, Emily Andre, Lisa Burck, Susan Copeland, Richard Garnett, Maren Gibson, Rachel Jacob, Melody Johnson, Robin Kusiak, Mary Lawson, Colleen McLaughlin, Emily Milligan-Thompson, Jennifer Parsons, Diane Potts, Rick Rader, Lori Raymond, and Courtney Swilley

NADSP staff

  • Joseph Macbeth, Executive Director
  • Desiree Loucks Baer, Assistant Executive Director
  • John Raffaele, Director of Educational Services
  • Dan Hermreck, Director of Certification and Education
  • Nicole Dama, Communications and Office Manager

NADSP Board of Directors

  • Caitlin Bailey, President
  • Jeanne Farr, Vice President
  • Janet Wilson, Secretary
  • Joshua Smith, Treasurer
  • Cheryl Dougan, Director at Large
  • Kelly Friedlander, Director at Large
  • Gabrielle Sedor, Director at Large
  • John McHugh, Director at Large
  • Leslie Stusiak-Drew, Director and Large
  • Becky Watson, Director at Large

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If you are interested in contributing to Frontline Initiative or reprinting an article, please contact —

Julie Kramme Institute on Community Integration University of Minnesota E-mail: frontline-dsp@umn.edu

View past issues of Frontline Initiative here: z.umn.edu/frontlineinitiative

Frontline Initiative is produced by the Research & Training Center on Community Living (RTC-CL), Institute on Community Integration at the University of Minnesota in partnership with National Alliance for Direct Support Professionals.

It is supported through a cooperative agreement between the National Institute on Disability and Rehabilitation Research, U.S. Department of Education (#3002-11245-00066875) and the RTC-CL at the Institute on Community Integration, University of Minnesota. The opinions expressed are those of the authors and do not necessarily reflect the views of the RTC-CL, Institute, University of Minnesota, or their funding sources.

Frontline Initiative is available in alternate formats upon request.

Logos for: NADSP, RTC-CL, UMN

NADSP update

The Changing Roles & Expectations of Direct Support Professionals

Author

Joseph M. Macbeth is the executive director of NADSP. He can be reached at jmacbeth@nadsp.org

Several years ago, I worked on a project that gave me an opportunity to interview dozens of Direct Support Professionals (DSPs) about their work. During those travels, I met a man who was a refugee from Rwanda. He had escaped its civil war and moved to this country. He told me that in his home country, he cared for people dying from the AIDS epidemic of the early 1990s. As he reflected on his work as a caregiver in Rwanda, he said that he was admired. He was respected and honored by his community for doing important work. Once he moved to the United States, he got a job providing direct support to people with disabilities in one of the wealthiest countries in the world. Yet he felt that the work was not respected or honored. He was unable to support his family on the low wages he earned. At the time, this interview shook me. I was reminded of it when we decided to dedicate this issue of Frontline Initiative to the changing roles of DSPs. There is much to be said about how DSPs are perceived in our society.

About 2 years ago, I listened to a senior official from the United States Department of Labor’s Bureau of Labor Statistics (BLS). The BLS is the principal fact-finding agency for the federal government in labor, economics, and statistics. This senior official was asked why "caregivers" in the United States earned such low wages. She said, "according to our surveys, caregivers earn low wages because the job requires low cognitive ability." Her response floored me. It reflected that she did not understand the true nature of the work of DSPs. DSPs make important decisions to support people. They help uphold peoples’ dignity and rights. They often support life-sustaining medical tasks. However, I now believe it is not uncommon for people to underestimate the importance of skilled DSPs from people who have never done it.

We need to change the public perception that society has about the DSP. We are advocating that the BLS recognize a standardized occupational code (SOC) for this growing and changing workforce. Sign the petition to the U.S. Office of Management and Budget. That’s the first step. We need to adopt a comprehensive approach to influencing public policy. This includes improving wages and ensuring access to professional training and career pathways.

Join us in taking a bold stance by banding together for a Standard Occupational Classification with the U.S. Bureau of Labor Statistics. Sign the petition!

Recent stories by the Philadelphia Inquirer and National Public Radio have educated the general public on abuses against children, youth, and adults with intellectual and/or developmental disabilities (IDD). Further, the United States Office of the Inspector General (OIG), in partnership with the Department of Health and Human Services (HHS) and the Administration on Community Living (ACL) recently released a joint report. This report found that up to 99% of critical incidents were not reported to the appropriate law enforcement or state agencies as required.

The serious nature of these reports is getting some attention they deserve. The long-term supports and services model for people with IDD is at a crossroads. DSPs are at the intersection. Last February, the President’s Committee for People with Intellectual Disabilities (PCPID) released its 2017 Report to the President - America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy. I’m so pleased that the PCPID identified that many of the issues that NADSP has been advocating to implement for years. In this report, the identified issues are now addressed in formal recommendations for policy implementation. I’m also proud that NADSP played a role in writing this report. We asked people that we’ve met across the country to share stories. These stories matter greatly. It’s important to continue telling them.

I hope you enjoy this issue of Frontline Initiative. I hope you agree with us that the roles and expectations of DSPs are changing. I hope you’ll help us usher in a new era of direct support work that fosters inclusion, self-determination, choice and freedom from abuse and neglect for those we support.

Resources

  • NADSP accredited education curricula for DSPs
  • NADSP member organizations

    Member organizations who employ DSPs can support them by joining NADSP’s membership,which, among other things, offers access to much of NADSP materials, archived webinars, news flashes, policy initiatives and other important information geared toward Direct Support Professionals and Frontline Supervisors. It’s important for professionals to be engaged with their professional membership organization.

  • NADSP industry partners

    National organizations who have a history of supporting our mission, values and promote our guiding principles that DSPs require a large scale advancement of the knowledge, skills and values of the direct support workforce.

  • NADSP membership form

NADSP Annual Conference: The Fourth One

Make your plans now to celebrate DSP Recognition week!

September 7 & 8, 2018
St. Louis Union Station Hotel, Curio Collection by Hilton
1820 Market St.,St Louis, Missouri, 63103

Join NADSP in St. Louis, Missouri on September 7 and 8, 2018 to ring in DSP week. You will have an opportunity to learn about best practices, share stories, network and gain insight on building direct support excellence. If you can’t make it this year, join us for The Fifth One in 2019!

We will also be awarding of The John F Kennedy, Jr Award for Direct Support Advocacy & Leadership at our Cocktail Hour reception.

Visit nadsp.org/annual-conference for more information.

personal story

The Changing Roles of Direct Support Professionals

We know that Direct Support Professionals (DSPs) fulfill many types of roles. The expectation is that supports are person-centered and happen in places where people without disabilities live, work, go to school, and more. DSPs are expected to advocate for people they support, as well as for the profession of direct support. We asked DSPs to tell us about their job.

Michelle Murphy, DSP-R

Michelle Murphy, DSP-R, Residential Specialist with Medication Support Duties at the Arc of Ulster-Greene, New Paltz, NY

In which setting(s) do you work?
My home base is a community residence in New Paltz, New York where eight people live, including a married couple who have an attached apartment to the residence. I often support at medical appointments in the community.
What do you find most beneficial about your work?
The most beneficial aspect of my work as a DSP is advocating for individuals to have confidence to speak for themselves at home, with their families, and in the community. This allows the people I support to design their own life plans and to take charge of their futures.
What is your greatest challenge in your work?
The greatest challenge in this work is changing the perception of this career field as a skilled profession. DSPs are not paid a fair wage for the vital work we do.
What are your future goals for this work?
I am currently enrolled in and plan to complete the NADSP credentialing process. I will continue to pursue certifications needed to teach others in the field. My goal is to continue to grow and learn in the field of human services while continuing to move upward professionally.

Wylie Sheppard

Wylie Sheppard, Community Integration Facilitator at the Arc of Atlantic County, Egg Harbor Township, NJ

In which setting(s) do you work?
I work in a community-based Adult Training Center.
What do you find most beneficial about your work?

We provide the following services:

  • Implement educational and recreational activities that promote skills that help people find employment
  • Support people to develop independent living skills and social skills
  • Support people to understand their individual rights and ability to exercise them fully
  • Provide transportation
  • Support overall health and safety
  • Teach people skills related to meal preparation, money management, healthy sexuality, and hygiene
  • Medication administration, record keeping, proper storage, and proper quantities
  • Coordinate regular medical and dental appointments to assure a safe and healthy lifestyle
  • Serve as a professional liaison between people, their families, guardians, employers, day program staff, other agency staff, professionals in the community
What is your greatest challenge in your work?
What I find most challenging about my work is finding out what people like and new ideas to motivate and challenge them. I want to help keep people engaged and learning.
What do you find most beneficial about your work?
We are successful when people come away knowing more about what’s here for them and knowing more about themselves.

Lisa Mottsey

Lisa Mottsey, DSP-C1, Residential Specialist at Arc of Ulster-Greene, Saugerties, NY

In which setting(s) do you work?
I currently work full time in a residential apartment setting and also on-call in another similar apartment setting.
What do you find most beneficial about your work?
The thing I find most beneficial about my job is that is that I am continually given opportunities for education in my field. I have been able to become college-accredited in the field that I work in through my agency. This is beneficial for both myself and the people that I support. It has allowed me to flourish as a DSP and become better at my job every day. These skills allow me to assist people to be more independent and fulfill their goals. My future goals for this work are to continue with my education so that I can continue to flourish in my position. I will continue to be an advocate for the people who live here. I hope to continue to attend conferences and further my education at the agency.
What is your greatest challenge in your work?
My greatest challenge at my job is finding time to connect with the people I support. My primary shift is overnights. I find it beneficial to pick up extra hours from time to time to stay connected and build relationships with the people. I am an active advocate and attend meetings and community functions with someone who lives where I work. This also helps me stay connected to people who live here.

Nikki Mundt

Nikki Mundt, DSP-R, Community Support Professional at Arc of Monroe, Rochester, NY

In which setting(s) do you work?
I work in the community and in non-certified homes.
What do you find most beneficial about your work?
The goals the people I am supporting, which are helping them to be independent members of the community.
What is your greatest challenge in your work?
It is often difficult to balance and understand how to apply some aspects of billing and business matters with being person-centered, especially if it seems to come at a financial cost or loss. We must remember that gains from person-centered support often can offset the financial loss in the long run.
What are your future goals for this work?
I hope to open up more opportunities and reduce limitations for people. I want to change the way the community views people with disabilities.

Tyler Hayes

Tyler Hayes, Assistant Manager and Floor Support in a residential home at Pathway Enterprises, Inc., Medford, Oregon

What do you find most beneficial about your work?
What I enjoy most about my work are the people I assist every day. I have opportunities to help advocate for their individuality and independence. I help them find information so they can make decisions in their life.
What is your greatest challenge in your work?
The greatest challenge in my work is knowing that people come and go in this field, both people supported and DSPs. Sometimes this can be a good thing. For example, if a supported person is moving to a more independent life or goal, I am happy for their success. At times this is followed by sadness, but it is a learning experience that encourages growth. It also creates new relationships and an opportunity to meet new people.
What are your future goals for this work?
My future goals are to continue to be an advocate for the people I support. It is an important role to assist people in finding their voice.

Corrinne Dick

Corrinne Dicks, Lead Staff​ at Pathway Enterprises in Medford, Oregon

In which setting(s) do you work?
Residential​ Home
What do you find most beneficial about your work?
I appreciate being given the opportunity to change lives by teaching independence and new skills, and supporting integration and inclusion as people want.
What is your greatest challenge in your work?​
The hardest thing for me is to step back and let people have their right to risk. This is a newer addition to training at the company I work for. It is a transition from protecting people from harm no matter what to giving them their right to risk. We try our best to support and provide the information for the person to make an educated decision. It’s my job to support that, even if I don’t agree with it. Ultimately, it’s not about me, it’s about the person and their choice.
What are your future goals for this work?
This field is ever changing and progressing. My goal is to change and progress with the field and with the people I support. I don’t want to get stuck in the rut of, "this is how we used to do it," or, "this is what I already know."

personal story

Speaking up for Community-Based Supports
Cliff Poetz, as interviewed by Julie Kramme

Authors

Cliff Poetz is a Community Liaison at the Institute on Community Integration at the University of Minnesota. He can be reached at poetz001@umn.edu

Julie Kramme is a researcher at the Institute on Community Integration at the University of Minnesota. She can be reached at dahl0488@umn.edu

Cliff Poetz at his home in Plymouth, Minnesota

In the past, people with intellectual and developmental disabilities (IDD) had few choices about where they lived. Hundreds of thousands of people lived in institutions in the 1960s. People who lived with their families received few supports. Direct support professionals (DSPs) who worked in institutions supported many people at once. There was little time for individualized support. Many people advocated for more community-based support options. As a result of this, more people today live in their own homes in the community. More people have choices about where they live and the supports they receive. One strong advocate for community-based supports is Cliff Poetz. Poetz has a nearly 50-year career in advocacy. Here he shares about his career, and he offers some advice for DSPs.

Poetz grew up living with his family. He moved to Minneapolis, Minnesota as a young adult. He could not receive the medical care he needed unless he lived in an institution. In Minneapolis, he lived in Portland Residence, a 100-person institution. Living in an institution meant signing in and out when he wanted to go out in the community. "There was little freedom to come and go," Poetz said. This could mean missing out on activities or time with his family. "If [staff at the institution] said I needed to be back at a certain time, I had to be back at that time."

Cliff at Portland Residence in the early 1970s

Poetz noted that DSPs at the time were remarkable since they were supporting so many people at once. Many people in the institution were stressed out, and this often led to difficult behaviors. Further, the building Poetz lived in had no elevator. He lived on the third floor. People were sometimes at the mercy of DSPs to help them if they wanted to go up or down stairs. It was difficult then for DSPs to support anyone in an individualized way. But, Poetz said, "this was not the focus of supports at that time."

In the 1970s, Poetz spoke out publicly against use of the "R" word. He and two others founded a group called, "Telling it Like It Is." They traveled throughout the state. They talked about discrimination. They worked to change some of the rules in the institution, such as having more freedom to come and go as he pleased. But Poetz also spoke out against institutional living. "For me," he said, "it meant independence and being able to live in the community." In the late 1970’s, Poetz helped start a group called Advocating Change Together (http://selfadvocacy.org/). He also founded People First Minnesota in the 1980s. He and others who were part of these partnerships helped shape legislation and policies to close Minnesota’s institutions. Poetz and others were also successful in getting grave markers placed for people who had died in institutions in Minnesota.

Poetz’s advocacy efforts in Minnesota prompted an invitation in 1973 from Senator Edward Kennedy who asked Poetz to testify at a hearing in Washington, DC. The hearing was on the Developmental Disabilities Assistance and Bill of Rights Act. He was the first person with an intellectual disability ever to testify before Congress.

The hearing audience had seen the documentary, Willowbrook: The Last Great Disgrace the morning before his speech. They were troubled as they listened to his experiences. He noted, "you could hear a pin drop. They knew we needed to do something." Yet some still resisted his ideas. He said, "People, including parents, often want to push back to protect people. But this can keep people from their dreams. We have come a long way from where we were. We don’t want to go back to institutional care."

Cliff and his realtor Cindy Johnson signing papers at the closing on his condominium.

As a result of his advocacy, Poetz moved from the institution into subsidized housing. Then, with help from the Arc Minnesota, Poetz was able to buy his own condominium.

For the last 17 years, Poetz has worked as a community liaison for the Institute on Community Integration at the University of Minnesota. He continues to speak out for people to have the right and opportunity to own their own homes (https://ici.umn.edu/content/what-drives-cliff-poetz). In 2010, Poetz bought a condo of his own in Plymouth, Minnesota. "It feels good to have my own place and come and go as I please." However, he notes that many people don’t yet have this opportunity. He asserts, "we still have a lot of work to do."

When policies threaten the chance for people to live in the community, Poetz sees this as a call to action. "When congressmen hear from many people, they realize they need to think about an issue." Poetz believes these are fights we can win. But, "DSPs need to speak out if they see it happening. One thing we know is that if we don’t speak out, we can go back to the old ways quickly. The more we speak up about inclusion, the more our society recognizes how harmful it is to go back to the old ways." DSPs today have the chance to get to know people they support. You support peoples’ choices about where they live. You support people in their jobs and to make connections with others. You can build partnerships with the people you support to help them achieve their dreams. DSPs are a very important piece in supporting people to have choices in the community.

One thing we know is that if we don’t speak out, we can go back to the old ways quickly. The more we speak up about inclusion the more our society recognizes how harmful it is to go back to the old ways." – Cliff Poetz

overview

The HCBS Settings Rule:
The Critical Role of DSPs in Implementation

Authors

Alison Barkoff is the Director of Advocacy at the Center for Public Representation in Washington, DC. She can be reached at abarkoff@cpr-us.org

Kathryn Rucker is Senior Attorney at the Center for Public Representation in Newton, MA. She can be reached at krucker@cpr-ma.org

Participants in a supported decision-making pilot program in Massachusetts. Supported decision-making ensures that people with IDD are making their own decisions in life, which is aligned with the self-determination goals of the Settings Rule.

Over the last several decades, more people with disabilities are living in the community rather than in institutions. This has led to an expansion of states’ Home and Community Based Services (HCBS) programs. A new rule was issued by the federal government in 2014 called the HCBS Settings Rule. It, for the first time, defines "community" for all Medicaid-funded HCBS programs. The Rule ensures that people receive services in HCBS settings that help them be integrated in the community. It promotes best practices developed by states, providers, and Direct Support Professionals (DSPs) over years of working with and learning from people receiving services. The Rule will enhance the quality and availability of HCBS. It also will ensure that all people receiving HCBS have full access to the benefits of community living. This includes opportunities to live, work, and receive services in integrated, community settings.

Change of the Total Number of People in Non-Family IDD Settings and Proportion in Settings of Different Sizes Between 1977 and 2016

Proportion of people living in non-family IDD settings

  • In 2016 there were 513,790 LTSS recipients with IDD not living with a family member: 8% lived in settings of 16 people or more, 8% lived in settings of 7-15 people, 84% lived in settings of 1-6.
  • In 2006 there were NNN LTSS recipients with IDD not living with a family member: 15% lived in settings of 16 people or more, 14% lived in settings of 7-15 people, 70% lived in settings of 1-6.
  • In 1996 there were NNN LTSS recipients with IDD not living with a family member: 29% lived in settings of 16 people or more, 17% lived in settings of 7-15 people, 53% lived in settings of 1-6.
  • In 1987 there were NNN LTSS recipients with IDD not living with a family member: 54% lived in settings of 16 people or more, 19% lived in settings of 7-15 people, 27% lived in settings of 1-6.
  • In 1977 there were NNN LTSS recipients with IDD not living with a family member: 84% lived in settings of 16 people or more, 8% lived in settings of 7-15 people, 8% lived in settings of 1-6.

The DSP role has become much more focused on individualized services as people live in the community.

Source: Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Bourne, M.L. (2017). In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and trends through 2015. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration

The HCBS Settings Rule ensures that HCBS settings provide people with disabilities supports that promote:

  • Access to the broader community,
  • Meaningful control over daily life decisions, such as deciding what to eat and setting their own schedule,
  • Personal relationships, including relationships with people without disabilities who are not paid to be in their lives and the ability to have visitors at any time,
  • Choices about what services they receive and who provides them,
  • Opportunities for competitive integrated employment, and
  • Individualized supports.

The HCBS Settings Rule will help states meet their requirements under the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead v. L.C. These laws require that services are provided in the most integrated setting appropriate to the person’s needs. This means settings where people with disabilities have opportunities to interact with people without disabilities to the fullest extent possible.

It will take states and providers of disability services time to adjust their programs to come into compliance with these new standards. The Rule gives states until March 2022 to develop and fully implement a "State Transition Plan" (STP). It requires that the public has an opportunity to give input into these STPs. Public input is a critical opportunity for DSPs, people with disabilities and their families, providers, and advocates. Through comments, people can impact how their state will implement this new Rule in their service system. States are beginning to submit their STPs for review. A number of states have received approval for their plans.

According to the HCBS Rule, the public must have an opportunity to give input in these State Transition Plans. Public input is a critical opportunity for stakeholders – including DSPs, people with disabilities and their families, providers, and advocates.

The Role of DSPs

The HCBS Settings Rule is an important step towards ensuring that people with disabilities can participate fully in their communities, achieve greater independence, and engage in social, recreational and employment opportunities that are meaningful to them. However, the integration and inclusion envisioned by the Rule cannot be fully realized without the hard work, dedication, and leadership of DSPs.

As a DSP, you have an important role to play in your states’ implementation of the Rule.

  • You have direct experience with the successes and challenges of supporting people in individualized, integrated community services. You can evaluate existing practices and service settings. You can recommend needed program changes. You can guide states’ systemic efforts to improve HCBS service models. You should share stories about ways you have found that help people experience community. When you see something that doesn’t work, share your insight into how it might be improved. Don’t underestimate the knowledge that you bring to the table.
  • You can help the people you support to put individual support plans in place. You can lead efforts to implement more individualized, person-centered services. You can help people receiving supports to direct their own plans. You can do this by helping the people you support share what is important to them. Then you can support the person to achieve their desired goals. Without DSPs, many dreams won’t be realized.
  • Your familiarity with the local community enables you to connect people to both formal and natural supports. You help increase people’s access to community programs and activities. You can also create opportunities for more individualized community involvement. You can serve as a bridge to meaningful community engagement.
  • You have personal knowledge of the people you support. You have day-to-day involvement in their lives. This provides opportunity for promoting greater autonomy, choice, and control over everything from activities of daily living, to choosing services or providers, to the development of independent living skills. You can make sure that people receiving services know that the HCBS Settings Rule gives them rights to further these goals. This includes their right to choose their own schedule, have visitors when they want, and choose with whom (if anyone) they want to live.
Resources exist to help support people to develop skills in speaking up.

The Settings Rule provides a unique opportunity for DSPs who care about, and are invested, in the delivery of truly integrated and individualized services. The ongoing development and implementation of STPs provides a clear way to influence the direction of states’ disability service systems. For DSPs, it is a chance to use your knowledge and expertise to advance best practices. You can help identify and overcome systemic barriers. You can impact statewide system reforms. You can bring about the next generation of more integrated, inclusive community services.

The HCBS Settings Rule’s goals of choice, independence, and inclusion fit with the mission of many home and community-based provider agencies. Along with DSPs’ role in reaching these goals, it is critical that agencies’ leadership support these goals. They can do this through trainings, supervision, and the professional culture they create. Meaningful integration is made possible through the day-to-day work of DSPs. DSPs make a huge difference when they empower individuals with disabilities to be part of their communities, make their own choices, and lead more independent lives.

Self advocate and Georgia Council on Developmental Disabilities member, Evan Nodvin, presenting on his life in the community at a national disability conference.

In conclusion, the HCBS Settings Rule is an unprecedented opportunity. It gives us the chance to move disability service systems towards best practices of providing more integrated and individualized supports. These help people with disabilities live meaningful lives included in their communities. The role of DSPs in implementing this Rule, both at an individual and systems level, is critical.

Resources

overview

What to Make of Managed Care:
Its Impact on Direct Support Professionals and the People They Support

Author

Holly Riddle, J.D., M.Ed., FAAIDD is Policy Advisor to the North Carolina Division of Mental Health, Developmental Disabilities, and Substance Abuse Services. She can be reached at holly.riddle@dhhs.nc.gov

Maybe two or three times in a career something "really big" happens. A change occurs that alters, in seismic proportion, the landscape of work. The rest of the time, changes largely go unnoticed. New practices and policies bubble up and push their way to the forefront. Sometimes, they co-exist with older ways of doing business. The process is slow. Occasionally, though, just as in nature, you witness radical change. The shifts in thinking are groundbreaking. You feel an earthquake-like shaking of the assumptions we have held for years. In the wake of these "big ideas" in human services, the path is cleared for new possibilities in the way Direct Support Professionals (DSPs) work with people.

The "goodness" of some shifts in human services is clear. The best of the "big ideas" fall into this category, motivated by deep forces at the core of our humanity. These forces include self-determination, independence, productivity, contribution and inclusion. Released, such forces uplift community and make it a better place for all. We all know examples of good and powerful paradigm shifts. There were the gentle winds of person-centeredness, a return, some said, to the soul of our work. There was the thunder storm of the Supreme Court’s ruling in Olmstead v. L. C.1, a case that washed away the old belief that the best we had to offer were congregate services. Most recently, a benign wave—the Home and Community Based Services Settings Rule2—is moving us ever closer, in Medicaid waiver programs, to welcoming and ethical communities. These system-wide changes are unquestionably positive and dynamic. They deepen the dignity and respect that we give to one another and, in doing so, transform lives. But what about another change: one that is equally powerful and pervasive, yet more controversial? What about the incredible heat created as managed care3 has pushed the tectonic plates at the foundation of Medicaid long-term services and supports? Is this shift subtle and unnoticeable or is it seismic? Either way, does it matter for DSPs?

Some argue that managed care is just a distant thunder for the frontline workforce. DSPs, they say, can shrug it off and go about their business. But, to the contrary, this is a hard rain with rolling thunder and a real impact on you and those you support. When skilled DSPs understand why managed care matters and learn to work with its force, there is potential for a common good.

Managed care

Not all managed care is the same. It is a potential force for good, when used the right way. The various features of managed care are often called a "toolkit" and for good reason. Tools are neither good nor bad. It’s how we use them—at all levels of a system—that matters.

Perhaps the most powerful managed care tool is capitation. Capitation is the set amount of money that a Managed Care Organization (MCO) gets. It is based on the numbers and characteristics of the people to be served by providers in the MCO’s provider network. In managed care, an MCO gets a set, or capitated, amount of money up front. This is different from the traditional, fee-for-service system, where the organization gets reimbursed after a service is delivered and the bill is sent in. If managed care is implemented well—with a fair rate for providers; equitable access to needed services and supports; and system performance measured against outcomes that matter to each person served—capitation can be a powerful tool for DSPs.

In managed care, an MCO gets a set, or capitated, amount of money up front. This is different from the traditional, fee-for-service system, where the organization gets reimbursed after a service is delivered.

Think about a familiar service: supported employment. Look at how that service plays out in many fee-for-service systems. It is typical for job coaches to bill for time spent face-to-face with the individual. The provider gets paid for the hours spent on job development—but only when the job development is complete. This creates a financial incentive to continue to "job develop." But the presence of the job coach at a work site when it is no longer necessary may reduce the person’s chances of developing relationships with co-workers. Over time, the result may be to limit the size and quality of the individual’s personal network. In this example, the fee-for-service system also does not reward the best DSPs. In fact, the practice of billing hourly for job development may mean that the job coaches who are the most efficient at developing jobs draw down less of a reimbursement for their employer. Provider reimbursements based on the number of hours spent in job development may mean that you move on too slowly to the next person. This unintended result of the fee-for-service system pulls against the direction in which the system is trying to move: getting people jobs.

By contrast, managed care’s capitation, paired with data collection, can create a more effective approach to employment. Paying up front can facilitate positive outcomes for the person supported. It can also make a job coaches’ successes more prominent. Up-front payment to the provider for an outcome like competitive integrated employment creates a financial incentive for job coaches to be efficient and effective. In this environment, the DSPs set sight on the outcome. You seek out a job that matches the person’s skills and interests; identify natural supports in the workplace; and access needed services. You fade supports when the outcome is met. MCOs collect a lot of data. If the data shows that the job meets the mark for the desired outcome, the MCO will be more likely to continue to contract with your employer. In the best of managed care systems, DSPs who deliver on individual outcomes will change lives and be valued for doing so. Moreover, MCO data about providers’ outcomes, when shared with the public, can assist people and families in choosing an organization, or even a DSP, with whom they want to work.

Managed care can promote innovation

Take the job coach example again. A tech-savvy provider may encourage DSPs to use technology—such as smart phones, tablets, and apps—to support employment outcomes. Using technology may help you become more efficient. Or it may assist a person with a disability to become more independent at work. Efficiency is a key goal of managed care. Better use of a job coach’s time means more people get jobs. Sufficiently funded and with a clear eye to outcomes, managed care has potential to hone best practice. It can empower DSPs to excel; help people achieve their life goals; and promote innovation in the delivery of services and supports4.

Managed care can advance DSPs’ mastery of competencies and raise their stature as professionals

The Americans with Disabilities Act (ADA), the Olmstead decision, and Medicaid’s HCBS Settings Rule are integrating services more seamlessly into daily life. Services and supports are increasingly tailored to a person’s unique needs. They take place in an individual’s home, school, worksite and community. In traditional, large group settings, supervisors and managers are on the premises. They provide DSPs with hands-on supervision. However, in inclusive, community settings, you often work solo. Out in the community, there are more opportunities where the DSP’s independent judgment and training are put to the test.

Your performance matters more than ever in a managed care environment. The MCO has its sights set on getting what it has paid for in advance. With data-driven accountability front and center, MCOs need providers that can deliver. For providers to thrive, the DSPs they hire must have the knowledge and skills to work independently, efficiently, and successfully. Never has a DSP’s demonstrated competency on the job mattered so much. It’s no accident that, in 2014, CMS published a set of core competencies for the frontline workforce in human services5. This development is accelerating the adoption of competency-based training for DSPs6. The need to hire highly competent DSPs who can work independently will likely strengthen the push, already underway, towards credentialing DSPs7. Managed care’s emphasis on outcomes and accountability is creating a gravitational pull. This pull is moving DSPs from paraprofessional to professional status. With that comes a new aim for MCOs and providers: to develop and adopt policies to recruit, retain, and reward this important workforce.

With data-driven accountability front and center, MCOs need providers that can deliver. For providers to thrive, the DSPs they hire must have the knowledge and skills to work independently, efficiently, and successfully. Never has a DSP’s demonstrated competency on the job mattered so much.

Managed care can improve retention of DSPs and promote valued outcomes

Competency-based training for DSPs is a sign of the times. It is used in both Medicaid fee-for-service and managed care systems. It is a particularly important addition, however, to the managed care toolkit. Research on the use of a competency-based curriculum for DSPs shows that such training reduces turnover8. Reduced turnover means longer retention of staff. When DSPs stay longer in a job, provider costs are dramatically lowered. Managed care strives for cost efficiencies.

Managed care systems that value those DSPs who can demonstrate core competencies are an even bigger win for people with disabilities. Studies show that competency-based training for DSPs results in improved outcomes for the people they serve9. The implications of this finding are earth shaking. MCOs that embrace competency-based training for DSPs can build a more qualified workforce. MCOs can also lower turnover and achieve savings. Finally, MCOs can use those savings to serve more people. This not-so-distant rumbling of change promises new career paths for the professionals who are indispensable to successful managed care systems: DSPs.

Managed Care will increasingly rely on DSPs to improve the quality of services

As managed care adjusts itself to the values of person- and family-centered thinking, Olmstead’s mandate, and the requirements of the Medicaid Settings Rule, the meaning of "quality" will be transformed. Your skill as a DSP will ultimately "make or break" an organizations and a systems quality improvement efforts. The strength of the system, at its foundation, will be determined by DSPs. It is your abilities to respond to the "unique culture, social network, circumstances, personality, preferences, needs and gifts of each person"10 that are the touchstone of exceptional service delivery.

Managed Care systems

Not all DSPs move mountains. Neither is all managed care good. Sometimes managed care merely pays providers to do the same thing faster, at less cost, cutting corners and underserving people along the way. Other managed care systems are skillfully set on a course to achieve quality. The best managed care systems invest in DSPs and that investment acts as a renewable energy that fuels quality. At the core of these systems, there is a "big idea" about quality. This elemental principle is simple, but of seismic magnitude in its capacity to bring about positive and pervasive change in any managed care environment. That principle is this: quality is "defined at the point of interaction between the staff member and the individual with a disability."11 It is from this point that the profoundly good energies of ethical community spring into being. It is from this place that DSPs can and do move mountains, changing lives for the better.

personal story

The Viscardi Dougan Family Story

Author

Cheryl Dougan lives in Bethlehem, Pennsylvania. She can be reached at cld7@lehigh.edu

Renzo Viscardi, center, with parents Anthony Viscardi and Cheryl Dougan

Nearly twenty years ago our son, Renzo, experienced cardiac arrest while participating in gym activities at school. He was only fourteen. The cause was an underlying condition called Long QT Syndrome. The rhythm of his heart was restored with a defibrillator, but not soon enough to prevent a severe anoxic brain injury. After nearly one month in a coma, Renzo’s doctors believed that he would likely remain in a persistent vegetative state.

After three months in hospitals with minimal progress, it was suggested that we place Renzo in a long-term care facility. This seemed like an unthinkable option for us. Instead, we transformed our dining room to become Renzo’s accessible bedroom. We furnished it with a hospital bed, assorted medical equipment, and supplies. Our son returned home unable to smile, swallow, speak, walk, control his bladder or bowels, or do any activity of daily living. We began the difficult task of learning to parent a child with life-long disabilities.

I assumed the role of unpaid "caregiver." This is such an inadequate word to describe the most critical and complex work one can imagine. We became a single income family. We wondered how we could possibly afford this life we were given.

Our son turned thirty-four this past year. We’ve survived and are, by all appearances, thriving. Our community of friends and our families supported us through the most difficult years, while I navigated insurance, established medical and therapeutic supports, and learned about disability services, while hands-on caring for our son’s every need. Reluctantly, we accepted Direct Support Professionals (DSPs) into our home to help. Some lasted only a few days. The work was too hard and the pay too low. A few of the best stayed. Together we began to imagine a brighter future for Renzo, the one he deserved.

With great fanfare ten years ago, we moved Renzo into a house around the corner from us. He works part-time. He volunteers in the community. He attends community college. He works out in the pool or gym, and rides horseback once a week. He has a very active social life, and he loves good cooking. A miracle? Not exactly the one we were hoping for, but still remarkable. This was made possible by a round-the-clock team of DSPs.

A miracle? Not exactly the one we were hoping for, but still remarkable. This was made possible by a round-the-clock team of DSPs.

Despite our best efforts to create a wonderful life for our son, we know it could crumble in a moment. Everything, absolutely everything, depends upon the stability and quality of his support staff. In our state of Pennsylvania, DSPs are being paid wages that are 25% - 50% below a living wage. They have not had a significant increase in over ten years. The average DSP salary in the United States is approximately $10.80. Many work two or three jobs. Nearly half are dependent on public benefits. Until recently, there were no nationally validated competencies for DSPs, no common professional code of ethics, no career ladder, and sadly, little recognition for the important work they do. No wonder the average turnover rate hovers around 40%. Our son’s DSPs deserve more.

As my husband and I approach our seventies we need to feel we are fulfilling our responsibility to provide a safe and secure future for our son. We’re doing all we possibly can. All that remains to complete our task is to know that a competent, ethical, and appropriately paid DSP workforce will be available, throughout his lifespan, to help him achieve his potential as a fully contributing member of our community.

overview

Shifting Expectations around Employment:
What can DSPs do?

Author

Jolene Thibedeau Boyd, MS, CESP is Chief Service Officer at Community Involvement Programs in Minneapolis, MN. She can be reached at jolenet@cipmn.org

Photograph of a young man with Downs Syndrome working as a barista.

The foundation of employment and day services was built more than 125 years ago. Sheltered workshops were created for people with visual impairments1. The first sheltered workshops were meant to provide people more opportunities for community engagement through work. But these institutions always fell short of integration and inclusion2. People were always separated from others without disabilities. However, this failure did not stop service providers from creating many similar programs. Many began in the latter half of the twentieth century. For example, in 1979, the Department of Labor reported that the number of sheltered workshops had increased from 85 in 1948 to 3,000 by 19763. This is a 30-fold increase!

At the same time, disability advocate and founder of the Independent Living Movement, Ed Roberts, called for a shift in the way disability was viewed. He wanted everyone to "develop high expectations for people with disabilities, allowing them to have control over their lives and to engage in meaningful aspects of life and participating in their communities by working."4 Working can be an important way that all of us earn a living and develop relationships with others. Opposite of Roberts’ vision, people who participate in facility-based settings and sheltered workshops may have limited opportunities to connect with their communities through work. In 2015, over 134,000 people served by IDD agencies in the US participated in sheltered workshops during the day5. A large number of people have no work at all.

Recently, there has been a shift in expectations around employment. This is shown by the "Employment First" philosophy: "Expecting, encouraging, providing, creating, and rewarding integrated employment in the workforce as the first and preferred option of youth and adults with disabilities."6 The Centers for Medicare and Medicaid Services have put this shift in expectations into policy. The policy states that home and community-based providers require that all licensed settings support greater access to the community. This includes supporting opportunities for employment in competitive and integrated businesses7. In addition, the federal Workforce Innovation and Opportunity Act (WIOA) was signed into law in 2014. WIOA was designed to increase successful employment opportunities through more access to education, training, and support services.

The U.S. Department of Labor’s Office of Disability Employment Policy defines customized employment as a flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized match between the strengths, conditions, and interests of a job candidate and the identified business needs of an employer. Customized employment utilizes an individualized approach to employment planning and job development — one person at a time . . . one employer at a time.8

Customized employment aligns well with the federal policies mentioned above. It gives people the chance to find jobs that fit their skills and interests. People are more likely to do well at their jobs, work at regular businesses, and earn competitive wages. By using customized employment, individuals are able to connect with others through the typical flow of daily working life.

Research helps show how much we need these policies and changes in our practices in supporting people with disabilities to find and keep community-based jobs. In a survey of over 16,000 people with intellectual and developmental disabilities, only 19% of people had paid work in the community9. Of the people who did not have a community job, nearly half of people said that they would like to have one. But only 30% of people had community employment as a goal in their service plan.

These numbers show there are lots of opportunities for DSPs to support people to find and keep a job that matches their skill set. This may require changes in day-to-day practices. What follows are a few suggestions that DSPs can use and suggest to their organization.

  • Embrace change. Although it is important to be thoughtful and take time to clear a path toward customized employment, don’t get stuck in planning. The time may never be "just right" for making change.
  • Start small. Customized employment is a person-by-person approach. Resist the urge to try new processes on a large scale. There will be new skills and processes to learn. Work on concrete steps and actions. This will keep you moving forward.
  • Start with someone who really wants a job. Rather than identifying someone who has little interest in employment or little team support, learn along with someone who is very motivated to find a job. Their enthusiasm and your commitment will be a great combination for going on the journey together. Then repeat the process as many times as needed.
  • Dig deeper with person-centered planning. Ask questions while developing person-centered descriptions that delve deeper into what is important to a person. Move past basic, formulaic questions. One helpful tool is the Personal Outcome Measures®10. This tool explores how people use their environments. It asks whether or not people are currently included in their work settings. It helps identify how people are or are not included in their community, and how they would like to participate. It moves beyond identifying a person’s interests and skills. These questions are so helpful for finding an appropriate job.
  • Use tools with a proven track record. In addition to the Personal Outcome Measures, Discovering Personal GeniusTM is another successful approach11. It uses processes for developing vocational profiles. For example, discovering a person’s ideal employment conditions. It also addresses doing informational interviews with small businesses. An informational interview is less formal than a job interview and allows the individual or employment consultant to ask questions about the business, products and services, and how the business needs are changing. A tour of the business is often part of an informational interview, and additional questions can be asked in a more conversational setting. Direct questions about available jobs are typically avoided during this process and there is no expectation of a job offer.
  • Measure progress. Once a person you support sets a goal, create a tracking tool to measure progress. This should be visual, so you can see the progress! For example, make an outline of a large thermometer on paper on the wall. Fill it in as you work toward the goal. The goal may be completing 20 informational interviews in a month. Or you can make it 100 informational interviews if you create a team. Or, make it a competition with others. For each person supported, track the amount of time it takes from beginning the process to the start of a new job. Track average wage per hour and average hours worked per week. Share these numbers with others in your organization, or even your Board of Directors.
  • Celebrate your success! Since you’re measuring your progress, it will be easy to see your successes. Make sure you take time to celebrate milestones along the way.
  • Recognize that you can’t be successful without others. Meet with other DSPs to compare notes. Talk through challenges you’ve faced. Ask support team members to brainstorm vocational themes. Share networks. Reach out to DSPs in other organizations who use similar practices.
  • Don’t give up. You might feel awkward on your first informational interviews. You will get better with practice. Use the tips and resources from Thought Sauce and keep trying.12

Many frameworks for developing high-quality organizations and teams can be applied to employment service organizations. Some of these are the Baldridge Foundation, The Council on Quality and Leadership, Entrepreneurial Operating System®, and Jim Collins: Good to Great. However, the framework chosen is less important than the commitment to focusing beyond the minimum standard. Reaching for high quality will have a significant impact on people’s lives.

program profile

Lessons Learned:
Integrating Person-Centered Practices with Employment

Authors

Jolene Thibedeau Boyd, MS, CESP is Chief Service Officer at Community Involvement Programs in Minneapolis, MN. She can be reached at jolenet@cipmn.org

Betty DeWitt is Quality Analyst at Community Involvement Programs in Minneapolis, MN. She can be reached at bdewitt@cipmn.org

Meg Lee is Program​ Manager​ of Supported Employment Services at Community Involvement Programs. She can be reached at mlee@cipmn.org

Photograph of a woman working in a bakery.

Person-centered planning (PCP) has come front-and-center in recent years in policy. It can really impact lives of those who access home and community-based services. As with most changes, using PCP has varied across providers. This ranges from early adopters experiencing successes to those that have taken a wait-and-see approach.

To encourage service providers to use PCP, some state legislatures have added "person-centered planning" language into statutes. This effectively mandates PCP and the development of person-centered descriptions for people receiving licensed services. Employment consultant, a type of Direct Support Professional (DSP) that typically focus helping people to find and keep jobs, they are also responsible for completing reports as a part of the annual planning process. Now they must also complete additional PCP paper work as a part of the annual planning process. Reviewing person-centered plans is required at least semi-annually, as well.

At Community Involvement Programs (CIP) in Minneapolis, MN, this initially created challenges for employment consultants. Meg Lee, Program Manager of Supported Employment Services at CIP, shared that employment consultants often received negative comments when they tried to conduct person-centered interviews at annual support team meetings. People asked, "What does this have to do with employment?" More than once, people receiving services told employment consultants, "This is none of your business!" Actually, bringing PCP documents to the annual team meeting seemed too formulaic. It took up too much time. It didn’t get employment consultants the results they wanted. It seemed to put pressure on the people receiving services. They responded the way they thought they should, rather than being honest.

CIP’s Quality Analyst, Betty DeWitt emphasizes, "Person-centered planning is really about working collaboratively to support people." CIP staff realized they needed to do a better job of explaining why they were doing PCP. Many people simply didn’t understand WHY their employment staff were asking all these questions. Some had never been asked questions about their dreams by an employment consultant before. They did not understand how a job could help them achieve their dreams. Meg trained employment consultants to talk with people about the impact of work on other areas of the person’s life. For example, people who depend only on disability benefits have little extra income. This makes it hard to realize some of their dreams. But if a person tells her employment consultant that taking a trip to someplace warm during the winter is a dream, the employment consultant can explain how saving earned income from working creates opportunity to achieve this dream. The employment consultant can talk about planning and can work with the person to save extra money from her paycheck. The employment consultant can check in regularly to see how close the person is to achieving her dream.

CIP encourages employment consultants to complete the planning process with people one-on-one. This happens outside of a support team meeting. Employment consultants have found this leads to more accurate and meaningful responses from people.

CIP has also adopted the Personal Outcome Measures®. Personal Outcome Measures is an in-depth process for person-centered discussions that includes an in-depth conversation (or conversations) with the person receiving services about dreams, goals, and the support needed to reach them. With the person’s permission, discussions with a support person who knows the person best, and even family members, may also be part of the Personal Outcome Measures process. CIP was recently accredited by the Council of Quality and Leadership. "PCP and Personal Outcome Measures align nicely to look at the person as a whole," said DeWitt. They help a person discover what is truly important to them, not just what is important for them. People set meaningful goals for themselves and work toward them. This helps them live their greatest lives. Everyone who participates in the process has the opportunity to see a person in new and different ways. This includes direct support staff, managers, and family members. Following one Personal Outcome Measures interview, the mother of a young man who receives Supported Employment Services from CIP stated, "The insights were important in both directions. The conversations gave me new goals for my future times with [my son]."

Policy changes demand more individualized opportunities for people, and true person-centered practices also require more from service providers and DSPs. They require us to recognize—and sometimes educate others about—the impact that having a job can have on other areas of life. It sometimes requires us to be creative. We may need to think differently about learning about peoples’ dreams and developing a PCP. And it requires commitment to the belief that every individual has a right to live his or her greatest life.

personal story

PARKWAY PIZZA’S PREPPING PROFESSIONAL
Community Involvement Programs, Minneapolis, MN

Authors

Meg Lee is Program​ Manager​ of Supported Employment Services at Community Involvement Programs. She can be reached at mlee@cipmn.org

Shauna Cropsey is Program Manager of Community Engagement Services at Community Involvement Programs. She can be reached at scropsey@cipmn.org

Rambo prepping vegetables at Parkway Pizza in Minneapolis

Just by his name alone, you might guess that Rambo has a big personality. He is an outgoing young man with a passion for people. He always asks everyone he meets about their history. What is their story? Where are they from? Who is in their family? He especially liked to ask what people like to eat. Since coming to Community Involvement Programs (CIP) in 2010, Rambo had been very outspoken about his desire to find a job. He wanted to work with people, ask these questions, and be independent. Although Rambo’s outgoing and friendly personality landed him several customer-service jobs, he struggled to find a balance between friendship and professionalism with customers.

Meg Lee, Rambo’s employment consultant, helped Rambo find and keep employment that best fits him. She felt that his people skills and passion for food could be used in a position where he wouldn’t need to negotiate the more sensitive interactions with customers. But she wanted to find a place where he could still be outgoing and make jokes. What better place than in a kitchen? After talking about the possibilities with Rambo, who hadn’t ever really considered cooking (although he said he definitely likes to eat!), he decided to interview at Parkway Pizza in South Minneapolis. Rambo was offered a job on the spot as a Prep Assistant.

Photograph of Parkway Pizza neon sign.

On the way home, Rambo expressed that he had no interest in working there. He said that he thought it was "stupid." He said he "doesn’t want to work." Meg encouraged him to stay positive and "look outside of the box." She believed he had many talents to bring to the job. She encouraged him to think about it over the weekend and talk about it with the DSPs who support him at home. She didn’t want him to do something that he didn’t want to do. But she believed this could be a positive work environment for Rambo.

The DSPs who support Rambo at home also expressed some doubts. Based on past experiences, they wondered if he would be able to learn the job and complete tasks independently. But Rambo decided to give it a shot.

In the beginning, Rambo was nervous about the new position. He didn’t know "how" to do the job. Once he realized that he was totally capable and had supports, he said, "I wanna work here all day!"

Rambo preps meats and vegetables for pizzas and salads. He portions cilantro cups. He makes garlic butter for their delicious garlic bread. And, he chooses the best hip hop music for the kitchen crew. Since starting his position in November 2014, Rambo has learned basic cooking skills and better communication. He has learned how to have positive and respectful interactions with others… while still having fun. Rambo’s thoughts on his newly developed skills? "I love to cook now and I love working here!"

Rambo entertaining the crew with is rapping skills during the photo shoot for Frontline Initiative.

Shauna Cropsey, Program Manager at CIP, remembers preparing for Rambo’s annual meeting in June of 2016. She read a sentence in his Vocational Assessment Summary that made her do a double-take: "CIP believed correctly that Rambo could be transitioned into natural supports at work relatively quickly. He is currently working at Parkway Pizza without a job coach on site." This put a huge smile on her face. For a really long time, no one in Rambo’s life believed he could work a "regular" job for minimum wage or higher. They definitely did not believe he could ever work independently. By helping Rambo achieve his ultimate goal to find a job, CIP was successful in helping Rambo to live his greatest life.

More than three years later, Rambo is still employed at Parkway Pizza. He has required only natural supports from his employer to do his job since April 2016. He no longer receives ongoing job supports from an Employment Consultant, though he is still involved in other community engagement activities with CIP’s support on the days he doesn’t work. Like others beginning a new job, Rambo started knowing nothing about being a prep cook. Now he is considered one of Parkway Pizza’s valuable employees!

overview

Crisis Response and Intervention:
Roles and Opportunities for Direct Support Professionals and Law Enforcement

Author

Rick Rader is director of the Morton J. Kent Habilitation Center at Orange Grove Center, Chattanooga, Tennessee. He can be reached at HABCTRMD@aol.com

Keep calm and practice the plan.

When a person experiences a behavioral crisis, the way the Direct Support Professional (DSP) responds is very important. A behavioral crisis is when someone becomes a danger to their self or others. It can also include destruction of property. There are often warning signs that a crisis is coming, but crises can appear to happen suddenly. People who regularly experience behavioral crises around others may become unwelcome in public places. They may lose their jobs. They may be banned from public transportation. They may be at risk of institutionalization. They may also be targets of physical control by police or others in the community. DSPs should be prepared to prevent and respond to crises in homes, workplaces, community or medical settings.

How well a DSP handles behavioral crisis depends on several factors. You are more likely to accurately read the person’s signals of an approaching crisis if you are more familiar with the person you are supporting. When you have a professional relationship with the person you are supporting, you offer personalized support. Your training and perception of your role in crisis may also influence their response.

Training for DSPs

Service providers typically offer training, and even certification, in crisis prevention. However, the content is too often limited to protecting the person and DSP from an altercation. This approach is too narrow. DSPs need to learn preventative strategies. This includes reading a person’s behaviors and helping to prevent crisis. Resources to help learn these skills are provided in the Resource section below.

Too often opportunities are missed for redirecting and realigning the person’s focus, energies, and intentions before a crisis happens. New environments, interactions, and expectations can be difficult for people. The community can provide a lot of unpredictability. However, person-centered interventions — those requiring DSPs to really know a person — are widely available. These can be based in an individualized support plan. Person-centered practices can provide a framework for de-escalation. They help everyone to focus on similar goals. Supporting people in diverse, community settings can often test DSPs’ skills if they have had limited experience. It is important that you build relationships with people and support people toward their goals. You can also learn skills to identify and support the person when they have a crisis. A quick reference resource designed for DSPs and family members is provided in this issue. It is a guide for who to call if a person you support is in crisis.

Who to Call in Crisis: A Guide for Direct Support Professionals and Families
Image of Who to Call in a Crisis chart/worksheet.
Chart adapted and reprinted with permission from the course, "Introduction to Mental Health and Mental Illnesses: Lesson 5 – DSP Support Strategies," in the College of Direct Support, an online curriculum from the Research and Training Center on Community Living at the University of Minnesota, and Elsevier.

Working with and Training Law Enforcement

Law enforcement sometimes becomes involved when a person is in crisis. In everyday community life, the role of the DSP in de-escalation may sometimes be short circuited by other factors. At times, people misperceive the actions of the people you support. For example, neighbors hear a commotion down the block. Or, well-meaning citizens misinterpret an awkward scenario at a shopping mall or restaurant. They may call the police and describe what appears to them to be an altercation or threat. The next opportunity for de-escalating a crisis falls to law enforcement. Training police officers in working with people with intellectual and developmental disabilities (IDD) is important. Some police officers may have limited experience with people with disabilities, and they too may misinterpret what is happening with a person.

Great training programs for police officers exist. The Memphis Model is one program1. This model started in 1987 as a result of the preventable death of a person with a mental illness after a misguided encounter with police. After this tragic event, the community of Memphis came together to educate law enforcement on mental health crisis. The 40-hour training covers recognizing mental health issues, crisis intervention, and de-escalation techniques. The goal is improving officer and community safety. Importantly, the model redirects people with disabilities away from the criminal justice system to the health and human service systems. Currently, there are over 2,500 communities in more than 40 states that offer a version of law enforcement training aligned with the Memphis Model.

Sadly, however, not every law enforcement training program includes training in disabilities. Typically, this only occurs when someone insists on IDD being addressed. There is also a shortage of people who are available to teach that model. In my experience as one of those professionals, providing this education to police officers leads to success in promoting and maintaining inclusion of people in their communities. Interestingly, there are also reports of police officers using the de-escalation training specific to people with IDD in other situations. Most notably, they use them in cases of domestic violence. These trainings support safe, healthy communities for everyone.

College of Direct Support on Crisis Intervention

The College of Direct Support (CDS) curriculum in the DirectCourse online training program offers courses that are specifically designed to help DSPs improve their knowledge and understanding of crisis prevention, intervention and resolution. The courses listed below are important for DSPs and other professionals who want to gain competence in preventing and responding to behavioral crises. Please explore the list below for more information on each of these courses.

CDS courses and lessons that may be helpful include the following:

  • Positive Behavior Support. This course is an introduction to behavior as communication. It helps DSPs understand how to support people to communicate other ways other than challenging behavior.
  • Functional Assessment. Functional assessment is a structured and comprehensive approach to understanding why a person engages in disruptive or harmful behaviors. This course teaches the value of careful and coordinated observation, asking good questions, and working with others to discover what’s behind behavior choices.
  • Introduction to Mental Health and Mental Illness. This course provides the DSP specific strategies they can use in daily support such as active listening and validation. It includes information on building respectful relationships with those they support and information on how to deal with crisis situations related to mental health conditions.

DirectCourse is a trusted training program that is built on the latest research and delivered online via a powerful learning management system (LMS), and it is accredited by the NADSP. It gives you the ability to easily access, customize, track and assess training across your staff and teams. DirectCourse can help you train staff in ways that improves the lives of the people they support, while meeting compliance requirements and reducing liability. To learn more about DirectCourse visit www.directcourseonline.com

program profile

Successes from Stories and Working Together:
New York State’s #bFair2DirectCare Campaign

Author

Ann Hardiman is the President & CEO at the New York Alliance for Inclusion and Innovation. She can be reached at ahardiman@nyalliance.org

In March 2017, the #bFair2DirectCare campaign pressed for inclusion of a living wage for DSPs in the New York State annual budget, bringing the message to the streets through a billboard and rally in New York City’s Times Square. Photos courtesy of #bFair2DirectCare.

In 2014, Governor Cuomo announced his plan to increase minimum wage in New York State. The New York Alliance for Inclusion and Innovation (the NY Alliance) and other advocates for providers that support people with intellectual and developmental disabilities (IDD) knew that this would impact Direct Support Professionals (DSPs) and our field as well. We were supportive of the increase. However, we worried that the state would not increase rates to pay for the minimum wage increases for DSPs. In a process that took two years, the NYS legislature adopted a multi-year, phased-in minimum wage of $15 per hour.

Today, a national and state DSP workforce shortage is clear. It is expected to continue and worsen. Sadly, all human services agencies are experiencing worker shortages. Some are in a crisis as they struggle to provide individualized, quality supports in the community. As a result, wages have become the highest priority in recruiting and retaining skilled workers. A strong and collaborative approach would be needed to get an investment of resources for our workforce. At the same time, increasing the minimum wage to $15 per hour across industries added pressure to the agencies providing supports.

Nine associations and organizations in New York worked together in a campaign called #bFair2DirectCare. Their goal was to ensure that public funds would support the minimum wage increase in the rates paid to provider agencies. The first stage of the campaign was successful. The state funded the rate increases impacted by the minimum wage increase.

The #bFair2DirectCare Campaign Successful Ingredients:

  • Awesome and authentic stories by the people that are most important to making the case: DSPs, people with disabilities, family members, supervisors, and agency executives
  • Well positioned public relations consultants who used traditional tactics as well as social media
  • Data were crucial to making the case. They were backed by a well-respected and independent academic institution —Massachusetts Institute of Technology (MIT).

Immediately after the minimum wage increase was approved, the #bFair2DirectCare coalition started the next stage of the campaign. The aim of the next stage was getting to a living wage. The workforce crisis was worsening. In June 2016, the coalition launched the next stage. They chose the theme, #300DaysToBetterPay. This aimed to influence the Governor’s Proposed 2017-18 Executive Budget. This budget was expected to be released in mid-January 2017.

This phase of the campaign was driven by the fact that DSP positions are not minimum wage positions. They require specialized skills, knowledge and attitudes. This was paired with the fact that for years the state had not provided adequate wage increases. Wage increases had not kept pace with inflation, cost of living, and an improved economy. Using the MIT Living Wage calculator (http://livingwage.mit.edu/), the #bFair2DirectCare coalition developed a plan to get to a living wage. A path over six years was set. They chose to advocate for smaller amounts of funding each year ($45 million/year) rather than one large sum of money ($270 million in one year). Creating a living wage proposal required regular surveying of agencies within the provider associations. Demographic, wage, turnover, vacancy and overtime data was gathered by NY regions. The study was updated regularly. The data showed a steady increase in vacancy and turnover rates. This helped support what providers were feeling: the shortage was getting worse. It needed to be addressed.

The first phase of the #bFair2DirectCare living wage campaign focused on the Executive Branch of government. The goal was to get $45 million into the Governor’s proposed budget for the first step toward a living wage. When it was not in the proposed budget, the campaign shifted tactics. They continued to work with the State Legislature. They worked in particular to gain support of members of the State Assembly and State Senate. Letters from DSPs, people receiving supports, parents, and other family members to the Governor, legislators, and to the editors of major news outlets were key to this phase of the campaign. Letters and stories were very important in supporting the need for funds in the final State Budget for the #bFair2DirectCare request. The Governor’s Office needed to hear from all communities in all parts of the state. Rallies, press conferences, a billboard in NYC’s Times Square, and radio and TV interviews, received significant media attention. Support grew.

Raising awareness was high on the list for the #bFair2DirectCare campaign. Many DSPs were active in telling their stories of poor wages, vast amounts of overtime required and the complexity of their jobs. Parents, people with disabilities and agency executives told the story from different angles. The partnership of a DSP and the person they supported was a very powerful combination.

Many DSPs were active in telling their stories of poor wages, vast amounts of overtime required and the complexity of their jobs. . . The partnership of a DSP and the person they supported was a very powerful combination.

Results. At the last press conference/rally before the end of the budget year the Governor announced $55 million in the budget! The budget bill passed with enormous legislative support!

Next steps. The #bFair2DirectCare campaign is a strong coalition of nine organizations. The coalition continues. There are four more years to go until a living wage will be reached. Meanwhile, sadly, the workforce crisis continues.

The NY Alliance includes a network of 200 agency providers of services to individuals with IDD in NYS. We are advocates of the DSP. We have supported many ways to increase the visibility and professionalism of the workforce. Some ways are:

New York Alliance for Inclusion & Innovation

  • Valuing and respecting workers through regional DSP conferences and award ceremonies,
  • Involving DSPs in decision making on the job,
  • Creating a NYS Chapter of the Alliance for DSPs,
  • Developing career ladders and credentialing programs, and
  • Increasing wages and benefits.

personal story

Advocacy for my Profession in #bFair2DirectCare

Author

Morgan Ryan is a DSP-R, Residential Specialist at the Arc of Ulster-Greene, Kingston, NY

Morgan Ryan with a group from the Arc of Ulster-Greene after a day of lobbying at the capitol with the #bFair2DirectCare campaign.

I work for the Arc of Ulster-Greene in New York as a DSP. Specifically, for the last two years I have worked at Livingston IRA as a "residential specialist." I participate in the NADSP credentialing program offered by my agency.

Previous to this, in my personal life I often fell into care/support/helping role. But, before I worked in direct support, I always felt out of place in my "professional" life. I was frustrated with all the tasks that made up the work I did. They often felt arbitrary. I didn’t have any experience working or even truly interacting with people with intellectual or developmental disabilities (IDD). I tip-toed into the field working in community habilitation, waiver respite, and early intervention. The process of learning about the people I work with, their abilities, tendencies, habits, things that they love, things that make them laugh, and the way they process the world around them made me feel like I’d found the right place. I found a place where I could be present and sensitive to the emotional expressions of others. What makes them happy? What makes them sad? How can I help them express their wants and needs, and what they don’t like? I have learned to become an advocate with people by watching them grow. That excited me so much — it made me feel I had actually found what I was apt to do.

I have learned to become an advocate with people by watching them grow. That excited me so much – it made me feel I had actually found what I was apt to do.

I initially got involved with the #bFair2DirectCare campaign when my manager asked me to attend a lobbying day in Albany. A person I support caught wind that there would be a platform for her to air grievances to state legislators. She wanted to attend so I went with her to the lobby day. I also looked forward to the opportunity to rally. While I arrived wearing everyday clothing, everyone else was dressed in business casual. I realized the old adages, "you can never be overeducated or overdressed" and "dress for the job you want" were true in lobbying! I realized that even though I was wearing what I often wear to work, it is helpful to remind assemblymen and other legislators that we are professionals. It is helpful if we look the part.

The actual experience of advocating was overwhelming. I was there with our communication manager who took me under her wing. She answered my many questions. She pointed out key people and how they relate to our organization. Seeing so many people that work in our field was such a novel feeling for me. Previous to this experience, it didn’t occur to me that people cared this much about direct support. I would have never imagined myself at a professional gathering of any kind. But there I was. I was pleasantly shocked when people spoke at the rally. It was like they were talking to me and talking about me! They spoke about the work that I actually do, rather than speaking in vague political terms or general feel-good ideas. Instead, the speakers addressed the nuances, struggles, and joys that come with this job. It felt really good, encouraging, exciting, and refreshing to be surrounded with people involved with my field. They carried themselves as professionals. It got my wheels turning about my worth in this career in this field. It felt good to hear people speak to my experience. This is a job I stumbled into and I love what I do. But, I also struggle with it because no matter how hard I work, I still cannot earn a living wage.

At the #bFair2DirectCare rally, John McHugh, our Executive Director talked to me about my experience in my job. When we spoke to legislator after legislator, he referenced the things I said. He talked about my concerns about the unfair DSP wages related to the important work we do daily. He spoke about how being a DSP is a calling. People do it because they love it, and because it matters. It’s a tragedy that the people who connect with this work give up because they can’t afford to live while doing it.

It’s a tragedy that the people who connect with this work give up because they can’t afford to live while doing it.

As a competent and passionate DSP, I seek out every possible way to be a professional. I seek to give myself more and better tools to do meaningful, innovative, creative, comprehensive, person-centered direct support work. Much of our field is undervalued but I want to be a part of shaping and changing direct support for the better. There is so much advocacy that needs to be done. There are so many better ways to do this work than what we have done in the past. A society can be judged by the way it treats its most vulnerable. As a DSP, I have the ability to directly affect change in my environment and local culture. Professionalizing this field by providing resources to hire, train, credential, and retain quality DSPs can help change this work from being undervalued to being highly respected. This translates to higher quality supports and better lives for people with IDD.

I am going back up to Albany to advocate in a few weeks. I am taking several people we support as well as fellow coworkers. We will make signs. We will meet with policy-makers to voice and explain how we are professionals. We want to show them how we are competent, knowledgeable, skillful professionals who work with intent. We deserve to be paid a living wage. I am committed as a professional and as an advocate for the people I support to the #bFair2DirectCare campaign in whatever way I can.

NADSP update

NADSP Public Policy Committee Update

Author

Kelly Friedlander, MSW, MPA is the chair of the Public Policy Committee at the NADSP. She is a partner at Community Bridges Consulting Group. She can be reached at kelly@cb-cg.com

NADSP Making a world of difference in people's lives.

Last spring, the National Alliance for Direct Support Professionals (NADSP) restarted its Public Policy Committee. Our goal was to advocate for public policy that affects Direct Support Professionals (DSPs).

The Public Policy Committee will focus on two objectives. The first is engaging in national public policy discussions with ally organizations. NADSP has recently joined the Consortium for Citizens with Disabilities (CCD). CCD is the largest coalition of national disability organizations. It has 110 members working together to advocate for federal public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society. "We are excited to join the CCD. We look forward to actively engaging with their Long-Term Services and Supports Task Force," says Kelly Friedlander, Chair of the NADSP Public Policy Committee. "We are in a unique political time when various disability organizations are working in concert in more focused and effective ways. NADSP is excited to be part of that effort."

NADSP attended and co-sponsored the National Association of Community Behavioral Health & Developmental Disability Directors (NACBHDD) Annual Legislative and Policy Conference and Capitol Hill briefing in Washington, DC in March. "Services are delivered locally. NADSP is interested in engaging with and building relationships with county and local behavioral health and developmental disability authorities," says Joseph Macbeth, NADSP Executive Director.

The second objective of The Public Policy Committee is to contribute to and spread important findings and information about DSPs. In addition to legislative updates, NADSP recently assisted the University of Minnesota’s Research and Training Center on Community Living in preparing the President’s Committee for People with Intellectual Disabilities (PCPID) 2017 Report, America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy. We were especially proud to highlight the work from some of our certified DSPs and stories from families and individuals who receive direct support services with whom we are honored to collaborate. The report also shares NADSP’s National Competency Areas and Code of Ethics.

Fueled by our recent accomplishments, the NADSP Public Policy Committee will continue work shaping policy to reflect our vision of highly-qualified and ethically-motivated DSPs who partner with, support, and empower people with disabilities to lead a life of their choosing.

NADSP is looking for DSPs to join our Public Policy Committee! If you are interested, please e-mail Kelly Friedlander at Kelly@cb-cg.com.