Invaluable: The unrecognized

profession of direct support

10.25.19

Rutgers – Boggs Center

Lecture Series

Mt. Laurel, NJ

Who I am, what I care about and my context

Policy

Practice

Research

Technical Assistance

Professional Education &

Training

Individuals+

Families/Allies+

Practitioners/Providers=

Quality and Scale

Community living and participation

Who are DSPs and what do our communities know about this profession?

PT

DSP Workforce. DSPs are

Key to Quality

DSP scope of practice: highly skilled profession

Understanding the Problem(s)

• COMPLEX issues

• No single solution

• Often get lost in context of saving services and fighting for people with disabilities

• YOU have to own the issues and LEAD the advocacy!

• Grassroots is the only way!

Building and sustaining a high quality direct support workforce: ICI Research Projects

• 2018 New York state workforce credentialing

• National Core Indicators Staff Stability Survey Data

• The effects of a competency‐based training intervention for DSPs on site‐level, learner, and service recipient outcomes

• Minnesota Organization and Worker surveys

Building and sustaining a high quality direct support workforce: 2018 New York state workforce credentialing

Names of the credentials offered

Wildwood Programs

Conover Scholars

Arc of Orange County

NADSP (four cohorts)

Arc of Monroe

NADSP (first cohort)

Arc of Ulster-Greene

NADSP (three cohorts)

Training Collaborative

NADSP – Supervisor (first cohort)

Competency-based programs

THENATIONALALLIANCEFORDIRECTSUPPORTPROFESSIONALS

Area1:ParticipantEmpowerment

Area2:Communication

Area3:Assessment

Area4:CommunityandServiceNetworking

Area5:FacilitationofServices

Area6:CommunityLivingSkills&Supports

Area7:Education,Training&Self-Development

Area8:Advocacy

Area9:Vocational,Educational&CareerSupport

Area10:CrisisPreventionandIntervention

Area11:OrganizationalParticipation

Area12:Documentation

Area13:BuildingandMaintainingFriendshipsandRelationships

Area14:PersonCenteredSupports

Area15:SupportingHealthandWellness

Method

1.

• Collect descriptive information (e.g., annual reports, marketing information, training materials, assessment documents)

• Interview program coordinator(s)

2.

• Standardized form with quantitative data: number of staff, turnover, vacancies, wages

• Differentiate between credentialed and non-credentialed staff

3.• Interviews with credentialing program participants

Outcomes of the credentialing program

Motivations reported for pursuing credential

Learn new skills

Gain new title & recognition

Make direct support a career

Encouragement from coworkers

Increase rate of pay

Recognition that the field is shifting and need to align skills, knowledge,

attitudes

Positively contribute to peoples’ lives

Positively contribute to organizational

culture

Impact on work

• Better listening to people supported

• Respect peoples’ rights

• Looking at environment on peoples’ behaviors

• Recognizing and honoring peoples’ cultural and religious preferences

• Learning skills to support families

• Learning more about advocacy

Challenges to completing credential

• Finding time to complete

• Lack of supervisor support

• Staff shortages

• Coursework was challenging

• Lack of internet service

• Challenges in the community

Building and sustaining a high quality direct support workforce: National Core Indicators Staff Stability Survey Data

• Secondary Analysis of National Core Indicators 2016 Staff Stability Survey

• Random sample of 1,406 providers in 20 states + DC

• Impact of organizational and state level factors related to DSP turnover

• Hope that findings can be used to inform advocacy for organizational and state level changes

Building and sustaining a high quality direct support workforce: National Core Indicators Staff Stability Survey Data

• The two research questions included: • What are the organizational level predictors of

turnover, as controlled for by vacancy rate, number of services provided, and organizational size?

• What state factors related to organizational level predictors of turnover, as controlled for by vacancy rate, number of services provided, and organizational size?

Building and sustaining a high quality direct support workforce: National Core Indicators Staff Stability Survey Data

• Key findings

• Organizational level• a higher percent of leavers within six months of tenure is significantly

related to less offering of PTO (p=0.025), less offering of health insurance (p<0.001), higher vacancy rates (p<0.001), higher proportion of part-time DSPs (p<0.001), and lower overall staff sizes (p=0.014).

• a higher turnover rate in the last 12 months is significantly related to lower DSP wages (p<0.001), and not offering health insurance (p=0.037 ).

• State level• a higher turnover rate in the last 12 months is significantly related to

a lower percentage of people living in individualized settings (p=0.049) and lower per capita spending (p<0.001).

Minnesota Direct Support Workforce Projects

Organization SurveyWorker Survey

Worker Survey Sample

Randomized convenience sample

20% completion (267 completed/1332 sent)

Largest MN sample to date across service sectors of information from perspective of DSWs

Building and sustaining a high quality direct support workforce: The Minnesota Worker Survey (2019)

Why do DSW leave their job?

90% - Found another job that pays more

64% - Found another job that offered better benefits

43% - Found another job with hours that worked better for their family

38% - No opportunity for promotion

36% - Supporting people is a difficult job

33% - Not recognized for the work they did

33% - Found another job closer to home

18% - Could not get along with co-workers

17% - Too little time with and/ or poor quality from supervisors

16% - Training and support were inadequate and/or poor

15% - Other reasons

What did we learn about who our DSWs are?

• 77.5% women

• Average age 43 years old

• Average household size of 3

• 58.5% average annual household income less than $40,000

• 28.4% have another job

• 63% have education beyond high school • (17% have 4 year Bachelor’s or graduate degree)

The Direct Support Workforce Summit 2018

1. Ensure that others know who DSPs are, what they do, and why they

are important

2. Improve DSP identity, respect, and recognition

3. Create an occupational title in Bureau of Labor Statistics

4. Fund use of competency-based training models that result in

credentialed or certified staff with wage increase

5. Develop industry-specific pipeline programs

6. Gather comprehensive data at site, organization, state, and national

levels

7. Provide and use evidence-based interventions

8. Promote increased use of self-directed options

9. Increase use of technology-enhanced supports

A Call to Action

Building & Strengthening the DSP Workforce

• Recruitment & Selection• Targeted Marketing

• Realistic Job Previews

• Structured Interviewing

• Status and Awareness (PSAs)

• Retention• DSW Competencies

• Education and Training

• Credentialing and Career Paths

• Recognition

• Membership and Networking

DSP voice DSP action: the ONLY possible solution

Many Types of Advocacy

How does this happen?

• Civic Engagement

• Understanding the Problem(s)

• Telling Stories

• Partnership and Collaboration

Tell A Story of Concern: Tips

• Every VOTER has one• Keep it brief, short and focused

• Stick to highlights• Avoid jargon and acronyms• Maintain confidentiality• From the heart and personal about YOU!!

• Use to move and motivate not overwhelm

• Motivate with action and hope• Make and “ask” and follow up

A single paragraph for each step

Describe:

Step1: THE BEGINNING -IT’S ABOUT YOU

Step 2: THE MIDDLE -A DAY IN THE LIFE OF A DSP

Step 3: THE MIDDLE - CHALLENGES OF BEING A DSP

Step 4: THE END-THE ASK

Step 5: THE FOLLOW UP

Step1:THE BEGINNING -IT’S ABOUT YOUMy name is Tammy and I’ve been a DSP for 36 years. I live in Minnesota Senate District 45 B in a suburb of Minneapolis. I started my career working with children who had complex medical disabilities as well a developmental disabilities. Most didn’t speak and those who did only spoke a few words. All relied on wheelchairs for transportation and most needed physical assistance with every aspect of their lives. Later I worked with adults. Some had extremely challenging often violent behaviors. Many had mental illness in addition to the developmental disabilities. Over the years I estimate I have worked with 35 people very closely and another 100 by working in other homes and participating in trips. I became a guardian for one of the kids I first worked with. She wasn’t expected to live past her teens. Her love of life and general feistiness served her well and she died two days short of her 48th

birthday.

Step 2:THE MIDDLE -A DAY IN THE LIFE OF A DSP

The diverse needs of the individuals I have worked with has meant that I have needed considerable training in a wide-ranging topics. Passive range of motion, seizure care, therapeutic positioning, communication and daily living cares were used daily in my first job. I also learned to replace a g-tube, med administration, postural drainage and other techniques to clear lungs. CPR and First Aid are universally required. Before starting at my current job we had extensive training and on-going support on preventing and de-escalation of violent behaviors. Many additional trainings on supporting people with various mental illnesses as well as learning the cycle of sexual offense to help a keep people from re-offending. Changing medical needs also necessitate further training. Using C-Pap machines, catheterization, sterile post-op wound care, Dementia care, and end of life pain management are only some of those areas. One of my favorite things about being a DSP is sharing my love of travel. I had a small group of people at Downtown Disney when I was volunteering at a travel company. The second Lord of the Rings movie was opening at a theater and there must have been 200 people in line mostly in costume and carrying replica weapons. We walked past them and nobody said a word. I asked if anyone found it odd. One woman replied, “ I just thought that anything can happen here.” A few days of exposure to new things and suddenly the possibilities were endless.

Step 3:THE CHALLENGES OF BEING A DSP

One of the biggest challenges in recent years has been budget cuts. 7% may not seem like much to a legislator but during previous budget cuts we eliminated most of the extras. When they tried to “catch us up” from previous cuts inflation had exceeded the amount returned to us. Trying to cut 7% out of an already bare-bones food budget is impossible when trying to meet federal guidelines of what we need to serve. We are also paying for many of the topical medications that are no longer covered because the individuals don’t make much money and would have to do without them. I’ve gone without a raise for years at a time. The ones we do get are usually a paltry 1 or 2 percent while health care goes up far more every year. Almost everyone I work with has a second job. One co-worker works 7 days a week. I need to work 10-20 hours a pay period to pay my bills. Due to having to care for my mom I could not work overtime for 8 years. Five years later I am still climbing my way out of $40k of debt with no end in sight.

Step 4: THE END-THE ASK

One of the most critical things I would like to see is increases that are tied to the rate of inflation. We are currently going backward. As the population ages we will need much more training in care for people with dementia. A lot of the people with Down’s Syndrome are not prescribed the expensive Alzheimer’s drugs without much advocacy by their parents or guardian. When the connection is well known why should they have to fight for current standard care? Advanced training protects the individuals we serve. They need quality care from people who will hold themselves and others accountable to a high standard.

Step 4:THE END-THE ASK

The ability to compensate DSPs at a higher rate would improve the retention of the workforce. This will allow us and many other families to get back into the full time labor market. Paying DSPs a livable wage will also assist in reducing the percentage of these workers that rely on other public benefits such as housing, energy assistance, Medicaid assistance and food assistance,

Please provide incentives to employers of DSPs to ensure we are well trained and compensated fairly for the complex skills required of us in our work. Demand that the MN Departments of Human Service, Education and Labor work together to find solutions to this growing crisis in Minnesota related to finding and keeping direct support professionals. It is going to take a significant investment and we are asking you to support that investment.

Examples of action steps (from 6/28/18 workforce summit)

1. Create an occupational title in Bureau of Labor Statistics (BLS)

2. Support the development of a profession using training and credentialing programs throughout the U.S. and related wage increases.

3. Support the development of pipeline programs to ensure new entrants into the workforce.

4. Promote increased use of technology-enhanced supports and self-directed options.

5. Develop and implement evidence based practices to improve retention.

6. Support public awareness campaigns that promote the direct support profession in U.S. communities.

7. Improve data collection options on relevant workforce outcomes.

Other possible policy actions steps (from Amy’s head)

• Fund the Centers for Medicaid and Medicare Services (CMS) to create centers of excellence on the direct support workforce in every state and nationally.

• Increase CMS value based purchasing incentives for that promote increased wages and and access to affordable healthcare benefits for DSPs.

• Fund Department of Labor to create competency based training programs (including apprenticeship) in every state.

• Create incentives for Department of Education to create demonstration pipeline programs for secondary students to enter the profession of direct support.

• Modify the Workforce Investment and Opportunities Act to require programs in states that focus on reducing turnover and increasing pipelines for the direct support workforce.

Videos for social media storieshttps://ici.umn.edu/product/invaluable/share-your-

story

• First, introduce yourself (My name is Mia and I work as a DSP.)

• Next, respond to only one of the questions below:• Share a story that addresses an issue or problem, including your suggested solution.• Why do you work as a DSP? (I work as a DSP because ...)

• What is the most rewarding part of your job? (I enjoy working as a DSP because ...)

• What is the most challenging part of your work? (The most challenging part of working as DSP is ...)

• What must change to make Direct Support a valued career choice?

• Keep it brief and concise. Practice telling your story before recording it. Stories should be between one and three minutes in length. After you’ve uploaded your video, it will be reviewed, captioned, and posted on this website

• https://ici.umn.edu/product/invaluable/share-your-story

Or to keep it simple…..

• Use your phone

• E-mail to jerry Smith at - smith495@umn.edu

• He’ll e-mail you back and ask you to sign a consent form

Coming Soon from the workforce summit…….

• Special issue of AAIDD journal Intellectual and Developmental Disabilities on the direct support workforce anticipated early 2020

• Book published by AAIDD Turning the Tide: Strategies for Individual and Collective Action Toward Workforce Stability (Working title) anticipated 2020

Other information

Amy Hewitt, Director

Research and Training Center on Community Living

Institute on Community Integration (UCEDD)

University of Minnesota, Twin Cities

102 Pattee Hall, 150 Pillsbury Drive SE

Minneapolis, MN 55455

hewit005@umn.edu

Development of this presentation was supported by Grant #90RTCP0003 to the Research and Training Center for Community Living from the National Institute on Disability Independent Living and Rehabilitation Research, U.S. Department of Health and Human Services. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not therefore necessarily represent official NIDILRR