y Jane Murawka A Hand for Their Hands · A Hand for Their Hands is a report on the Empowerment...

A Hand for Their Hands

A Handfor Their

Hands

DevelopmentalDisabilitiesInstitute

Detroit, Michigan

2004

A report on the

Empowerment Education Training Initiativefor

Direct Support Professionals

Elizabeth JanksBarbara LeRoyRobert Lasker

Phot

o by

Mar

y Ja

ne M

uraw

ka


Foreword

The Developmental Disabilities Institute (DDI) was establishedat Wayne State University in 1983 by the U.S. Administrationon Developmental Disabilities, U.S. Department on Health andHuman Services (ADD/HHS). DDI is one of 63 University Centersfor Excellence in Developmental Disabilities (UCEDDs) nationwide.The Institute is mandated to provide education, community support,research, and information dissemination. As part of its educationand community service mandates, the Institute began a traininginitiative for direct support professionals in 1996. Direct supportprofessionals provide personal care, support, and training for peoplewith disabilities throughout their lives.

A Hand for Their Hands is a report on the Empowerment Educationtraining initiative for direct support professionals and their super-visors. The report provides the context for the design of the training,describes the training model and its three components, the character-istics of training participants, our research findings on their percep-tions of systemic issues in direct support, and a discussion of emergingissues.

Over the past eight years, our trainers have trained more than 10,000direct support professionals in more than 600 events, statewide.We hope this report will encourage direct support professionals, super-visors, and consumers to learn more about our training initiative andto become involved in the critical issues that challenge the delivery ofhigh-quality, sensitive, and timely services for people with disabilities.

To learn more about how you can become involved with this initia-tive, either as a direct support professional or trainer, please contactus as follows:

DDI website: www.wayne.edu/ddi

DDI toll-free telephone: 1 (888) WSU-4DDI [1 (888) 978-4334]

Elizabeth Janks: [Initiative Director] (313) 577-6368

email: [email protected]

— Barbara LeRoy, Ph.D.— Director— Developmental Disabilities Institute

TheEmpowerment

Educationtraining initiativehas trained more

than 10,000direct supportprofessionalsin more than600 events,statewide.


Setting the contextThe direct support professional work-force is a vital link for quality servicesand outcomes for people with disabili-ties. In order to live as independentlyas possible in communities of theirown choosing, people with disabilitiesneed direct support professionals.

The Supreme Court of the UnitedStates, in its landmark decision“Olmstead vs. L.C.” (1999), recognizedthat people with developmental dis-abilities have the right to live in theleast restrictive environment. TheCourt held that the state of Georgia hadviolated the Americans with Disabili-ties Act by requiring two women toremain in a state mental hospital aftertheir doctors had determined that theywere ready to live in the community.

The Court concluded that people withdisabilities must have opportunity toparticipate in everyday activities suchas family and social activities, work andeducation. While this ruling estab-lished community living as a right, thedirect support workforce is thelynchpin that will make it a reality.

In his New Freedom Initiative (NFI),President Bush said, “Community-based care is critically important topromoting maximum independenceand to integrating individuals withdisabilities into community life. TheAdministration will help removebarriers to participation in communitylife.” A goal of NFI is promotingfull integration of individuals withdisabilities into their communities.

An Executive Order on CommunityBased Alternatives recognizes a com-

mitment to community and its vitalrole.1 Unfortunately, this federal policyand recognition by the government ofthe value of community life for peoplewith disabilities has not necessarilytranslated into positive outcomes forDirect Support Professionals.

At the same time that the courts andpolicy initiatives have establishedcommunity living as a right for peoplewith disabilities, the reality of ouraging population threatens theseoptions. America is an aging society,and a recent Health and Human Ser-vices report indicates that by 2050 thenation will need three times as manylong-term care workers as are now em-ployed to meet the needs of peoplewho are aging and/or have disabilities.

About 5.7 million to 6.5 million long-term care workers—comprising nurses,nurses’ aides and home health and per-sonal care workers (direct support pro-fessionals) will be needed to meet thenation’s needs2. This increased demandfor direct support professionals is metwith a dearth in our population ofpeople who traditionally are recruitedto be direct support professionals:women in their late 20s to late 40s. AsSecretary of HHS Tommy Thompsonsaid, “the shortage of long-term careworkers, if left unaddressed, will affectall Americans in very personal ways.”

While the nation as a whole is strug-gling to address emerging needs, thecrisis in direct care workforce is evenmore acute in Michigan. Forecasterspredict that the crisis in care will hit assoon as 2010 in Michigan, with a needfor 40,000 direct care workers.

1 Bush, G.W. Executive Order 13217:Community-Based Alternatives of Individuals with Disabilities, June 18, 2001.

2 HHS report, May 2003

“Community-based care is

criticallyimportant topromotingmaximum

independenceand to integratingindividuals withdisabilities into

community life.”

PresidentGeorge W. Bush,

New FreedomInitiative

February 2001

– 1 –


Train-the-Trainer Program

Statewide Recruitment and Quality Assurance

With the project infrastructure estab-lished, it was time to hire trainers.A train-the-trainer model makes itpossible to provide the training state-wide. More than 300 trainer applica-tions were distributed, and six train-the-trainer workshops at variouslocations throughout the stateprepared 40 trainers to implement thetraining initiative.

Trainers receive a toolbox containingall the training materials needed toconduct the workshops. Evaluation ofeach session and on-site monitoringof the training events assure that thetraining remains fresh and supportsparticipants’ needs. Trainers are alsogiven on-going technical assistanceto support their training efforts.

DDI’s Empowerment EducationTraining InitiativeModel DevelopmentThe DDI Training Initiative wassystematically developed to addressthe needs in the field from the perspec-tive of consumers, direct support

professionals, service providers, andadministrators. The Initiative was de-veloped through the steps detailed be-low:

Needs Assessment

A needs assessment with agencyadministrators and service providerswho employ direct support profession-als addressed training needs, trainingaccessibility, and strategies for assuringparticipation by direct support profes-sionals. To further explore the findings

from the needs assessment, a series offocus groups were conducted withdirect support professionals. Partici-pants were asked what training topicswould be most beneficial for their jobs.Suggestions provided a reference forthe initial curriculum.

Curriculum Design Board

A Curriculum Design Board comprisedof consumers, family members, anddirect support professionals prioritizedtraining topics for the project, basedon the findings from the needsassessment and focus groups. The

design board met regularly andreviewed the project’s training curricu-lum as it developed, offering insightsto improve it and to ensure that thecurriculum was appropriate for itsintended audience.

Curriculum Development

The Training Initiative comprisesthree distinct training components:Empowerment Education, Pathwaysto Leadership, and Direct Support

Professional Supervisor Training. Thecompleted curricula were reviewedby experienced professionals workingin the field.

The Seven Stepsto

Development ofthe Initiative’s

Model

• Needs Assessment• Curriculum

Design Board• Curriculum

Development• Train-the-Trainer

Program• Statewide

Training• Initiative

Evaluation andContinuousImprovement

• Dissemination

– 2 –


Who Are the Trainers?

Trainers were recruited from amongboth providers and consumers. Com-mitment to a philosophy of empower-ment for consumers, experience, anddirect knowledge of the issues are corequalifications for the job. The abilityto work collaboratively as a trainer,present the established curriculum andinteract positively and respectfullywith training participants are alsoamong the keys to success. After would-be trainers complete their own train-ing, they are hired and expected totravel to training sites throughout thestate, collect and submit evaluationinformation from participants, main-tain communication with initiativestaff, and submit documentation in atimely manner.

Statewide Training

Since the beginning of the project,training events have been conductedthroughout the state. Significant effortshave been made to ensure that train-ing sessions are as accessible as possiblefor all who need and want to availthemselves of these opportunities.Since training began during theproject’s second year, there have beenan average of more than 86 events per

year (about 75 per year if the total isaveraged over the duration of theproject). To make it accessible, train-ing is available in alternate formatsincluding large print and audio; self-instruction modules are also madeavailable to participants. The map atright shows that training events havebeen conducted in 56 of Michigan’s 82counties (68 percent).

Initiative Evaluation and Continuous Improvement

Each of the three training tracks isevaluated using a variety of tools, in-cluding pre and post-tests, evaluationof the trainer’s performance, telephonesurveys, and questionnaires. Post-testscores are generally in the 85 percent

range. Eighty percent are satisfied withthe trainer’s performance and curricu-lum content. An extensive summativeevaluation is currently being con-ducted; a report will be available whenthe evaluation process is completed.

Trainers for the Direct Support Profes-sional component include two primaryconsumers, two people who havefamily members with disabilities, andnine direct support professionals (twoof whom also have family memberswith disabilities). Trainers reside ineight different counties and thus en-sure the initiative’s capacity to providetraining to Direct Support Profession-als working anywhere in Michigan.

Pathways to Leadership employs eighttrainers, half of whom have disabili-ties or have family members withdisabilities. Many of these trainers werealready employed by the MichiganCenters for Independent Living, andthey conduct training sessions at theseorganizations’ sites.

Counties wheretraining events

occurred

“I found thesession very

informative andvery well done!

Great job!”

– Training– participant

– 3 –


Dissemination

Training programs, training events,and outcomes are disseminatedthrough direct mailings, newsletters,and our website (www.wayne.edu/ddi).Additionally, some disseminationof project activities and results hasbeen facilitated through the national“Innovations” training catalog, aproduct of the American Associationof University Centers of Excellencefor Developmental Disabilities.

The project has also used new andweb-based technologies. It developeda website for the Michigan Allianceof Direct Support Professionals(MADSP) with members of thatorganization, as well as the web pagespresenting its own activities. TheMADSP also has utilized a ListServto communicate among its members,and also publishes proceedings of itsregular statewide Forums.

Pathways to Leadership Training

This curriculum was developed for employers (persons with disabilities andfamily members) and their personal assistants. The focus of the curriculumis the employment relationship between consumers and direct support profes-sionals. Specific topics addressed include:

• the roles of employers andemployees

• communication

• strategies for conflict resolution• strategies for effective,

respectful working relationships.

The ultimate outcome of the Pathwaysto Leadership training is an employ-ment contract between the consumerand the direct support professional,specifying responsibilities and the

terms of employment. Pathways toLeadership has been approved for3.0 Adult Foster Care Licensee andAdministrator training credits.

Empowerment Education Direct Support Professional Training

• Supporting Growth ThroughOpportunity and Choices

• Ten Successful and AssertiveSteps for Working withProfessionals

• Person-Centered Planning:Valuing the Contributions ofDirect Support Professionals

• Supporting People inEstablishing Friendships andMaking CommunityConnections

• Conflict Resolution

• Teaching Made Easy• Stress Management: It’s All

About Awareness, Attitudeand Action at Work

• Self-Advocates and DirectSupport Professionals Working inPartnership to Achieve Life’sDreams

• Making the Transition A.S.A.P. –As Smooth As Possible

• Self-Determination: Our Right toMeaningful and Fulfilling Lives

Each module of the EmpowermentEducation curriculum takes approxi-mately two hours to train and is

accredited for 2.0 continuing educa-tion credits.

This curriculum targets direct support professionals, comprising 10 modules:

Curricular Components and Procedures

The Three Curricula

1,89

4

2,11

3

1,85

9

1,64

0

1,41

5

1,18

3

July

’97

– Ju

ne ’9

8

July

’98

– Ju

ne ’9

9

July

’99

– Ju

ne ’0

0

July

’00

– Ju

ne ’0

1

July

’01

– Ju

ne ’0

2

July

’02

– Ju

ne ’0

3

Number of Trainees(by year)

“I will dooutreach to other

agencies in thecommunity tohelp empower

people withdisabilities.”

– Trainee

– 4 –


Trainer Profile: Abe Lindner

Direct Support Professional Supervisor Training

This intensive six-day training curriculum builds the following discrete workcompetencies essential for supervisors of direct support professionals:

• Personal growth• Communication• Team building

• Multi-tasking and stress reduction• Creativity• Extending the vision

The training, designed to be imple-mented in a retreat-style setting,focuses on supporting team leadershipat work. It offers agencies an opportu-nity to create work environmentsthat support team building andincrease staff expertise, as well as pro-viding potential to enhance quality ofservices to consumers. Direct support

professional supervisors participate ina dynamic interactive learning processthat improves their supervisory skillsand offers a new perspective on theirworkplace roles. This training, in-tended for newly-promoted supervisorswho may lack formal training and havelimited supervisory experience, helpsthem become successful leaders.

Abe Lindner teaches independent living skills and optionsat work, at home, and in the community.

Abe has been an Empow-erment Education Trainerfor four years. He has a spe-cial way of relating to histraining participants. Hiseffectiveness and popular-ity as a trainer are a result

Direct Support Profession-als come to the job for avariety of reasons. Abebecame a job coach forJudson Center after beinga purchasing agent for amajor corporation. “I im-mediately found the workinteresting, and the peoplewere the reason,” he says.

In his new position Abefound an unexpected re-ward, meeting the womanwho would become hiswife. Lisa, who is also adirect support professional,helped Abe out on occasionwhen his staff couldn’t pickup consumers from a jobsite. The pair began datingand later married, mergingtheir two families to createa family of nine.

of his personal experience,and his interactive trainingstyle has been enhanced byyears of substitute teachingin schools. He enjoys itmost when a direct supportprofessional shows interest

in improving skills in sup-porting an exclusive life forconsumers.

The Lindners teach byexample, mentoring adultswith cognitive disabilitiesby welcoming them intotheir home and teachingthem independent livingoptions in the community.Abe summed up their roleas mentors by saying, “Wehave people living with usthat other people—includ-ing family members—didn’t think could live inde-pendently. We work withthem, help them developnatural supports and watchthem grow as individuals.It’s amazing what they canaccomplish.”

Planning and Preparing for a Successful Training Session

Training sessions are conducted byarrangement between an agency thatprovides DSPs and initiative staff. Ittakes about two to four weeks to plana successful training event. Once asession has been scheduled, the only

other things the agency must provideare an audience of 10 or more people,a room in which the session canbe held, and an overhead projector.The trainer brings all other neededtraining materials.

“Excellent! Excellent!So much

informationthat we havebeen tryingto compile,without the

time to do so.Such a big help.”

– Trainee

– 5 –


Trainer Profile:Debbie Morgan

Figure 1. Demographic Characteristics of Trainees (by percentage)

YEAR 1998 1999 2000 2001 2002 2003 mean value

Gender

• Female 84 88 91 76 65 76 80

Race/Ethnicity

• African American 41 29 41 47 72 23 42.17• Caucasian 49 62 51 44 17 70 48.83• Hispanic/Latino 1.5 2.4 2.3 1.5 1.1 .9 1.67• Native American 3.7 4.8 2.9 1.3 .9 1.3 2.48• Other 4.8 1.8 2.8 6.2 9.0 4.8 4.9

Education

• Did not finish• High School 3 2 2 3 9 4 3.8

• High School• diploma or equiv. 41 55 61 66 63 67 58.8

• Associate’s degree 13 17 13 22 14 12 15.2• Bachelor’s degree 11 20 19 8 12 14 14• Bachelor’s degree + 1 7 5 2 3 3 3.5

Disability

• Primary 13 11 10 16 24 19 15.5• Secondary 37 38 35 36 35 40 36.8

During the sixth year of training,the Developmental Disabilities Insti-tute completed a review of both theproject, and the general statewidesituation confronting direct support

Training Participants

professionals and those who employthem. Training participant character-istics, their employment situations,and their perceptions of their trainingexperiences are presented here.

Six-Year Review

More than 10,000 direct support professionals have participated in training since 1998.As Figure 1 shows, the vast majority of those participants were female, with a high schooleducation. They were nearly evenly split as to race between African American and Caucasian.While 15% of the participants reported that they had a disability, more than one-thirdwere in a secondary category (had a family member with a disability).

She stayed in direct supportwork with exception of atwo-year stint managing asmall country-music radiostation in Marine City. Shemissed direct support work,however, and decided toreturn to the field. Thistime, she became a super-visor. Debbie receivedseveral promotions andeventually was named agroup home manager for

Lutheran Social Services.Recently, she began a newjob managing severalhomes for Alternative Liv-ing Services.

“Longevity—in this chal-lenging work— requiresthat you rejoice in the smallchanges you make peoples’lives,” she says. “There aretimes that you can’t alwayssee the big picture. Beingpleased with small victories

Debbie Morgan attendedthe first EmpowermentEducation Train the Trainerclass in 1998, and has beena direct support profes-sional since 1974. At thattime, Debbie was inter-ested in a job with a flex-ible work schedule becauseshe was a young motherwith two boys to support.

gives me the strength tocontinue, especially inthese times of reduced staffand increased demands forservices.”

Debbie says EmpowermentEducation has given her theopportunity to get varietywithin her chosen field. Thetraining gives her a chanceto work with direct supportprofessionals outside herorganization. She’ll stay

“I think thisproject is

exemplary:excellent,

well thought outmaterials and

concepts.”

– Trainee

– 6 –


with this work because sheknows it makes a differencein people’s lives.

Debbie enjoys being anadvocate and fighting forconsumers to improveaccess to services—and theservices themselves. “WhenI advocate for a service thata consumer wants and theyreceive it,” she says, “I geta sense of satisfactionknowing I helped in the

process.” She finds trainingenjoyable because it givesher an opportunity to teachother direct support profes-sionals how to becomeadvocates. Then they, inturn, can assist consumersin becoming self advocates.

Debbie knows that burn-out is a threat to anyonewho embarks on a careerin direct support. Shemakes a strong case for

Direct support professionals who havecome to training sessions sponsored bythe initiative have been working in thefield for varied lengths of time. Someare seasoned professionals with more

Figure 2 also indicatesthat the majority of directsupport professionals aresupporting people withdevelopmental disabilitiesin a wide variety of settings.The majority of them areworking in individuals’homes, followed by employ-ment sites and commun-ity venues. Based on thediversity of settings, directsupport professionals needto be able to providepersonal care, as well as

than 10 years’ experience, while oth-ers are new to the field (<1 year). Thetraining provides an opportunity forexperienced workers to share theirknowledge with new workers.

Work Environment

HOME – 46.9%

EMPLOYMENT

– 20.8%

COMMUNITY – 12.1% NURSING HOME – 9.2%

SCHOOL – 4.2% OTHER – 8.8%

career ladders and mentor-ship programs. “I drew mystrength from support Ireceived from other directsupport professionals Iworked with, and theiradvice,” she says. “I alsotried to mix up the routineof the work schedule, tostay positive.”

Persons with MentalImpairments – 7.1%

Persons who areAging – 5.2%

Persons with PhysicalDisabilities – 1.5%

Other – 5.9%

Population Served

Persons with SensoryImpairments – 0.8%

Persons withDevelopmental

Disabilities and/orIntellectual Disabilities

– 79.4%

Debbie Morgan mixesexperience and enthusiasmin her role as a trainer.

housekeeping tasks, jobtraining and communityliving supports. While theDDI training initiative doesnot address these variedand specific skill sets, itdoes provide workers withthe values, communicationskills, and problem-solvingstrategies that they needto work across settings andwith the unique character-istics of the consumers theysupport.

Figure 2. Employment Experience

> 10 years – 24.4%

7-9 years – 11.7%

4-6 years – 20.3%

1-3 years – 23.6%

<1 year– 19.9%

Length of Employment

– 7 –


– In Memoriam –

Rozellia “Cookie” Gant

Program and Participant Feedback

Cookie once told me most people couldn’t pronounceRozellia correctly, so she preferred her nickname, “Cookie.”Which, she said, more people could pronounce and cer-tainly would remember after meeting her.

How could you forget Cookie? She wasa woman with an endearing smile whodominated a room with her presence.Cookie was an Empowerment Educa-tion Trainer for several years and trav-eled across the state to facilitate train-ing sessions. She was well liked as atrainer because she personalized thetraining material, injecting it with herown stories and examples of how thecurriculum worked in real-life situa-tions.

I, for one, will miss her visits to myoffice. She would drop by to chat abouttraining but, invariably, the subjectwould get around to the current stateof some policy regarding disability. Shealmost always had an idea of howto right injustices, and she wasn’t afraid

to travel alone to advocate publicly for her beliefs. Cookiewas a fearless advocate for people with disabilities andher activism brought her to Washington, D.C. and manyother places.

When she had an idea that could help people, she quicklywent about finding resources to move from conceptto product. She received grants to produce a resource guide

of Michigan’s hotels, restaurants, andentertainment venues that were fullyaccessible. Cookie was well knownin advocacy circles. She served onseveral committees and boards, includ-ing those for ADAPT and MichiganProtection & Advocacy Services. Shetruly was inspirational to the many thatknew her.

Sadly, Cookie passed away last fall.In her honor, the Cookie Gant Memo-rial Fund was established. If you(or your organization) wish to makea donation to this fund, whichprovides scholarships to disability ad-vocates, please call 1(800) 760-4600or contact Norm DeLisle via e-mailat <[email protected]>.Rozellia “Cookie” Gant

Project staff recently completed initialanalysis of trainee attitudes and re-sponses to their training experienceduring the most recent biennial report-ing period (July-December 2003).While final analysis of the data is on-going, some trends are clear. All ofthose responding agreed or stronglyagreed that training objectives wereclear, presentations were appropriate toaccomplish those objectives, and thattrainers had excellent knowledge about

content and presented information inan interesting and effective manner.Agreement to the question of whethertrainers left sufficient time for discus-sion and questions, and were able toadequately answer all questions or sug-gest resources to contact for additionalinformation was, similarly, 100 per-cent. As shown below, responses toother evaluative questions showed aremarkably high opinion as to thevalue of the training regimen.

The trainer’slecture improvedmy knowledge

The lecturewill improve

my skills

The handoutsimproved

my knowledge

The handoutswill improve

my skills

The exercisesimproved

my knowledge

The exerciseswill improve

my skills

59.1%

37.4%

58.6%

36.2%

65.2%

29.6%

65.5%

28.4%

61.5%

34.2%

62.6%

33.9%

Figure 5. Participant evaluation of training (July-December 2003) (n = 117)

- disagree - agree strongly - agree

5.2%5.2%3.5% 6.1% 4.3% 3.5%

“Keep up thegreat work!”

– Trainee

– 8 –


Direct Support Professionalsand Consumers Speak Outon the System

In 2002 DDI had the opportunity toconduct a survey with direct supportprofessionals and consumers whoreceive personal assistance servicesto examine system reform issuesfrom both provider and recipient

perspectives. This survey was con-ducted in affiliation with the PersonalAssistance and Support Services project(funded by the Centers for Medicare &Medicaid Services, or CMS). A discus-sion of results from this review follows.

Consumer VoicesWhile consumers were quite satisfied with the services they received (Figure 6),they identified several factors that interfered with them having maximum con-trol over their personal assistance (Figure 7).

mean Very Satisfied Somewhat DissatisfiedSatisfied Satisfied

(4) (3) (2) (1)

Reliability of services 3.1 34% (69) 34% (69) 14% (28) 4% (28)

Choice of who I hire 3.0 33% (67) 24% (48) 13% (27) 8% (28)

Consistency of services 3.0 31% (62) 30% (60) 15% (31) 10% (28)

Amount of services 3.0 30% (60) 33% (67) 13% (27) 10% (28)

Timeliness of services 3.0 29% (58) 32% (64) 18% (36) 7% (28)

Type of services 3.0 27% (55) 32% (65) 17% (35) 6% (28)

Training of PAs 3.0 25% (51) 31% (62) 14% (29) 7% (28)

Supervision of PAs 2.9 25% (51) 30% (60) 16% (33) 6% (28)

Figure 6.Consumer satisfaction with personal assistance services received (n = 202)

Low wages to personal assistants 54% (108)

Shortage of personal assistants 44% (88)

Not enough benefits to personal assistants 41.5% (82)

Lack of choice regarding the types of services used 36% (72)

Lack of choice regarding the amount of services used 36% (72)

Not enough hours (or too many) to offer 34% (69)

Inadequate information on consumer directed options 27% (55)

Lack of choice on who I can hire 19% (39)

Lack of choice on firing personal assistants 10% (20)

Figure 7. Factors interfering with consumers havingmaximum control over PASS (n = 202)

“This is a verydemanding field,

physically andmentally. Wagesare not so greatso it has to be a

job you careabout and stick

with. The respectyou get fromconsumers is

more than youget from theemployer.”

– direct supportprofessional,

respondingto survey of

attitudes

Maintaining good relationships and opencommunication is always important.

– 9 –


Direct Support Professional VoicesDirect Support Professionals fundedthrough one of five CMS programs inMichigan3 were surveyed. Those work-ers who completed the survey werepredominantly female, between theages of 25-54, had completed highschool or had some college and workedfull-time in the area of personal assis-tance. Most reported that they hadprovided personal assistance for at leastthree years. When asked how long theyplanned to continue to work in directcare, more than half of the respondentsindicated that they weren’t sure, while30 percent stated that this wastheir permanent career. Most chosethis work in order to help people

(Figure 8), and stay in it because of therewards of caring for others (Figure 9).However, a majority identified wages,health insurance, job stability andrespect as the most important workingconditions (Figure 10), and continuingproblems in these areas may lead tofurther difficulties in recruitment andretention among these vital workers.Moreover, respondents indicatedlimited or low job satisfaction withpromotion opportunities, wages, and(especially) benefits (Figure 11).Comments reflect the fact that DSPsare doing a hard job for little moneybecause of the close relationships de-veloped with consumers.

mean Very Satisfied Somewhat DissatisfiedSatisfied Satisfied

(4) (3) (2) (1)

Being valued 3.6 26% (40) 36% (56) 16% (24) 10% (16)

Training 2.9 23% (36) 36% (56) 16% (24) 9% (14)

Job stability 2.8 20% (31) 41% (63) 19% (29) 8% (13)

Workload 2.8 19% (29) 43% (67) 20% (31) 7% (11)

Supervision 2.4 21% (12) 36% (55) 16% (25) 11% (17)

Promotion opportunities 2.1 10% (16) 19% (29) 25% (38) 29% (45)

Wages 2.1 8% (12) 23% (35) 29% (45) 30% (47)

Benefits 1.9 6% (10) 19% (29) 18% (28) 42% (64)

Figure 11.Personal assistants’ level of job satisfaction (n = 154)

3 The five CMS programswere: Home Help, MIChoice Waiver for Eld-erly and Disabled, theChildren’s Waiver, theMichigan HabilitationSupports Waiver, andMichigan CMHS – Free-dom of Choice Waiver.

To help others 76% (117)

To care for a family member 34% (53)

Flexible work hours 32% (50)

To work close to home 25% (39)

To work toward a nursing or 18% (28)other health care degree

To get a needed job 17% (27)

Figure 8.Main reasons for choosing to be apersonal assistant (n = 154)

Figure 9.Reasons for remaining apersonal assistant (n = 154)

Wages 67% (104)

Health 59% (91)insurance

Job stability 54% (84)

Respect 52% (80)

Paid sick leave 38% (59)

Paid vacations 38% (59)

Training 34% (53)opportunities

Workload 29% (44)

Tuition 17% (26)reimbursement

Transportation 10% (16)assistance

Child care 10% (15)assistance

Figure 10.Most important workingconditions (n = 154)

Rewards of caring for people 81% (125)

I need the job/money 44% 68)

Flexible work hours 36% (56)

Respect I get from consumers 33% (51)

Recognition and respect 16% (27)from supervisors

“The materialwas excellent andwell-explained.”

– Trainee

– 10 –


Trainer Profile: Laurie Thomas, Advocate

PASS Project Research Recommendations

2. There is a needto educate DSPsregarding the“Earned IncomeTax Credit” program.One possibility isto send out a noticewhen the state mailsout W-2 forms.

Laurie Thomas has enjoyeda long affiliation with theDevelopmental DisabilitiesInstitute. It began with aproject that involved a col-laborative partnership withthe Grand Rapids Centerfor Independent Living,where Laurie was em-ployed at the time. Whenshe learned about the Em-powerment EducationProject, Laurie was imme-diately interested in be-coming a trainer.

Though she was alreadyemployed as an advocate,specializing in communityorganizing and finding em-ployment opportunities forpeople with disabilities, shewas convinced that her per-sonal experience with dis-ability would enhance thetraining project. “I had apersonal awakening aboutmy own disability and howit impacts my life,” she says.“I looked around and real-ized other people like mewere sharing the sameplight.”

Laurie values Empower-ment Education because itconnects her with people

on the front line, those whowork directly with consum-ers. “The training is abso-lutely necessary for directsupport professionals andpersonal assistants,” shesays. “It works by helpingthem be more effective intheir daily jobs.”

As a person with a disabil-ity, Laurie brings credibilityto the learning experience.“Trainees tend to really lis-ten to me because I am aliving example of howpeople with disabilities can

lead active, productivelives,” she says.

Laurie herself is, indeed,active. She is currently seek-ing the Unitarian Universal-ist minister credential, toadd to her already com-pleted coursework in thissubject. She is also the au-thor of Proud Voices, a his-tory of the disabilities rightsmovement in Michigan.

The book is based on a col-lection of interviews withleaders of the Michigan dis-ability rights/advocacy

movement. It chroniclesthe disability rights move-ment of people with physi-cal disabilities. “People inMichigan didn’t necessarilyknow about Ed Roberts’ ac-tivities in the California dis-ability rights community,because communication inthose days made it moredifficult for people to knowwhat was going on in otherparts of the country,” saysLaurie. Ultimately, sheadded, the disability rightsmovement “led the way forpeople with disabilities tofind employment andhousing.”

Laurie’s advocacy meansworking to continue thestruggles made by the pio-neers she chronicles, and toadd to the gains alreadyachieved. “We have to con-tinue to advocate for ourrights, and make sure wedon’t lose opportunitiesbecause we have disabili-ties,” Laurie explains.

Anyone interested in ob-taining a copy of ProudVoices can contact Eliza-beth Janks at the Devel-opmental Disabilities In-stitute.

Laurie Thomas is an active trainer, advocate, andactivist for disability rights.

3. DSPs should beeducated on howto keep Medicaidand work, how toenroll children intoMI Child, how toaccess the childcaresubsidy, and howto get into grouphealth plans.

1. Recruitment ofdirect supportprofessionals is,and will continueto be, a majorissue. Communitiesmay want to poolresources in orderto centralize therecruitment process.

The session wasvery informative.

I wouldn’tchange anything.

— Trainee

– 11 –


Supporting DirectSupport ProfessionalsA Brief History of The Michigan Alliance ofDirect Support Professionals

One late fall day in Flint, in a room onthe lower level of the Prahl College

Center at Mott Commu-nity College, 37 directsupport professionalsconvened the first meet-ing of the Michigan Al-liance of Direct SupportProfessionals. The Na-tional Alliance, whichwas already established,lent infrastructure to theMichigan chapter and

staff from the Empowerment Educa-tion Training initiative at DDI facili-tated that first meeting, on October 24,1998.

The purpose of the first meeting wasto learn about the National Alliance ofDirect Support Professionals, discussthen-current activities in Michiganthat reflected Alliance goals and deter-mine the type of relationship Michi-gan Direct Support Professionals mightwant to have with the Alliance’s na-tional mission.

The presentation to the group of interested members included:

• History, mission, overview andgoals, as well as the fact that thealliance is not a memberorganization.

• That the alliance seeks to joinother organizations to promotethe inclusion of Direct SupportProfessionals.

Attendees were asked: “What are Michigan Direct Support Professionals currentlydoing to support or reflect the five goals of the national Alliance?”

1. Enhancing the status of directsupport professionals.

2. Providing better access for all directsupport professionals to highquality educational experiences

3. Strengthening the working relation-ship and partnerships betweenDirect Support professional’s,self-advocates, other consumergroups and families

4. Promoting systems reform (policy,legislation, funding practices)that improves access to educationand career paths, as well asimproving compensation.

5. Supporting the developmentand implementation of a national,voluntary credentialing processfor direct support professionals

After much debate, participants con-cluded that they would continueto meet and focus on NADSP Goal #1

and work on increasing respect forDirect Support Professionals.

The Prahl College Centerat Mott CommunityCollege has hostedmonthly meetings ofthe Michigan Allianceof Direct SupportProfessionals sincethe group’s inception.

• That the Developmental DisabilitiesInstitute is committed to offeringassistance (time, money, etc.) tothe group and to working as asupportive group partner.

– 12 –


Six years later the Michigan Alliance of Direct Support Professionals continues tomeet monthly at Mott Community College. This dedicated group of direct sup-port professionals has accomplishments several goals, including:

• Four Direct Support ProfessionalForum Conferences have beenheld and were attended by 350direct support professionalsworking at agencies statewide

• Sponsored a workshop on state andfederal tax credits that benefit lowwage workers by Hollis Turnham,Michigan Policy Director,Paraprofessional HealthcareInstitute.

• Sponsor scholarships for Direct Sup-port Professionals who want toattend state conferences.

• Worked to develop a website hostedat <http://www.wayne.edu/DDI//commsup/MADSP_splash.htm>.

• Established an electronic ListServat <http://[email protected]>

• Wrote letters to allMichigan StateRepresentatives andSenators highlightingissues of relevanceto direct supportprofessionals and thepeople they work forin the field.

• The Michigan Alliance of DirectSupport Professionals is currentlyworking toward adopting by-lawsand working on incorporating asa not for profit organization.

If you would like to join us please con-tact Elizabeth Janks at (313) 577-6368for details. The group generally meets

Meetings of the Michigan Alliance of DirectSupport Professionals are invariably active.

Annual ForumsAmong the most visible activities of thealliance is holding an annual forum fordirect support professionals. The eventsprovide an opportunity for DSPs andtheir allies around the state to gatherand share ideas and perspectives aboutwhere the field is headed and how it

can be promoted and enhanced. Mem-bers who seldom—if ever—are able toattend monthly meetings, and com-municate via mail and the ListServ areable to meet their colleagues and con-tribute to vital discussions and deci-sions.

Recognition awardsAn important occurrence at each year’sForum is the public recognition givento individuals who have made out-standing contributions to the fieldwithin our state. Exceptional directsupport professionals are presented acertificate by State Representative PaulaZelenko of Michigan’s 50th District.Recognition awards honor colleagueswho selflessly promote the work of Di-rect Support Professionals and exem-plify an ideal of the service DSPs shouldprovide.

the third Thursday of each monthat Mott Community College, PrahlCollege Center in the Genesee Room.

StateRepresentativePaula Zelenkocongratulates arecognition awardrecipient during theMichigan Associationof Direct SupportProfessionals’Annual Forum.

– 13 –


Trainer Profile: Kathy Flowers,Community Support Coordinator at The Disability Network

Emerging IssuesRecruitmentHistorically, the importance of hiring quality direct care professionals to workwith people with developmental disabilities has been an on-going problem.4

Recruiting and retaining a quality workforce is a difficult issue that has persistedthrough several paradigm shifts: institutionalization, deinstitutionalization, andthe current era of community supports. Today, we are on the verge of an em-ployment crisis for DSPs that will affect much of our aging society’s population.HHS Secretary Tommy Thompson asserts that the shortfall in the direct supportworkforce can be addressed if basic recommendations are adopted,5 including:

These recommendations align with direct support professional workforce researchfindings that:

4 Hall & Hall, June 20025 HHS report, May 20036 Larson, 19987 Hewitt & Larson, 19948 Teal, March/April 2002

• Direct support professionals needadequate compensation and benefitsto take care of their families. ManyDSPs are America’s working poor,with two jobs to meet living costs.6

• Career ladders and educationaladvancement should be madeavailable to advance theprofessionalism of the directsupport workforce.

• DSPs need competency-basedtraining to perform their jobs well.7

• DSPs should be valued andrespected for their work.8

• Little or no training is availableto DSP supervisors, often promotedout of necessity. In new roles, theydon’t have the needed resourcesto solve daily staffing dilemmas.

• Innovative recruitment strategiesthat will increase the labor pool bytargeting non-traditional personssuch as◆ high school students◆ college students, and◆ people with disabilities

• Supporting state and local initiativesto increase the recruitment andretention of direct supportprofessionals

• Continuing to support trainingand education for long-termcare workers

• Finding new sources of wageincreases, worker compensationand benefits

• Engaging employers and employees,as well as state and local officialsin a dialogue on issues related topay, benefits, career ladders, andimproved worker conditions

Kathy began her career asa direct support profes-sional at the MichiganYouth & Family Develop-ment Agency. She workedas a direct support profes-sional for individuals withhearing impairments whohad a dual diagnosis.

There were two reasons shewanted that specific assign-ment. “My son Christopherwas an infant and I discov-ered that he was deaf,”Kathy explains. “I decidedto return to college to studysocial work, and I wanteda job that would give me

Kathy is well-recognizedas an advocate for

people with disabilities.

Among her activitiesis participation

on the boards ofmany disabilityorganizations.

“I will use thisinformationto train both

consumers anddirect supportprofessionalsto have more

effective workingrelationships.”

– Training– participant

– 14 –


– 2000

– 2001-’02

CompensationIn 2002, the Michigan Assisted LivingAssociation conducted a Wage andBenefit Survey of mental health pro-viders. Analysis of responses from 106MALA members who provide mentalhealth services, either in residential li-censed or unlicensed settings, yieldswage data for 2001 – 2002.

The average starting pay for a directcare worker in a licensed residentialmental health setting was $7.52/hour,virtually unchanged from the $7.53rate in a comparable survey from 2000.The average starting hourly wage in anunlicensed setting (e.g., a supportedindependence program), was slightlyhigher at $7.73/hour, not muchchanged from the $7.66 average in2000 (Figure 12).

Annualization based on a 2,080 hourwork year (40 hrs./wk., 52 wks./yr.),results in earnings of $15,642 per yearfor licensed direct care workers and

$16,078 per year for direct care work-ers in unlicensed settings. For homemanagers in a licensed residential set-ting the average starting pay was$10.62 per hour, little changed fromthe $10.54 rate of 2000. The overallaverage pay for a home manager orequivalent in a licensed setting was$12.21 per hour or $25,397 per year.

Increases in wages since 1995 have notkept up with the basic cost of living.The federal poverty threshold for asingle parent with two children is$14,494 and for a two-parent familywith two children it is $18,244.Michigan’s tax on a family of threewith minimum-wage earnings is sev-enth highest in the nation.9

In terms of indirect compensation, 20percent of providers have cancelledhealth benefits, while 75 percent haveasked employees to share more of thecosts of the benefits offered.

both the experience in thesocial services field andmore information to helpmy child.”

Today, as a Supports Coor-dinator at the DisabilityNetwork, Kathy works withpeople who have develop-mental disabilities. She hasbeen with her current em-ployer eight years.

Five years an Empower-ment Education trainer,Kathy has strong viewsabout the experience. “Em-powerment Educationgives me an opportunity towork with people who aredirect support professionalsand to teach about theprinciples of self-determi-nation, person centered

planning and the impor-tance of independent liv-ing,” she says.

Kathy believes DSPs shouldreceive on-going trainingbecause of the direct andpositive benefits trainingcan have on the lives ofpeople with disabilities.“Empowerment EducationTraining teaches direct sup-

port professionals how toempower consumers intheir everyday lives,” shesays. “It helps them under-stand consumers’ disabili-ties, clears up misconcep-tions, and fosters a relation-ship based on mutual re-spect.”

9 Michigan League forHuman ServicesOctober 17, 2003

Reflecting on this profession as regardswages and benefits it is not surprisingthat turnover rates are very high or thatit is increasingly difficult to recruitpeople to the field. Residential directcare staff turnover was 53 percent andresidential home manger turnover was18 percent. This far exceeds the na-tional averages of 12 percent for all in-dustries and 19 percent for health ser-vices.

Turnover is costly as the employer hasalready paid to train a worker and nowmust train another—if one can befound. Turnover is highest during thefirst six months on the job, so there isa shortage of experienced staff to assistconsumers or to be promoted. Most im-portantly, an underpaid, under-trainedand under-appreciated direct supportprofessional adversely impacts thequality of services consumers receive.

Retention

Direct C

are Worker

Licensed Residential SettingD

irect Care W

orker

Unlicensed Setting

Hom

e Manager

Licensed Residential Setting

$7.5

3$7

.52

$7.

66 $

7.73

$

10.5

4

$10

.62

Figure 12.DSP Wages 2000-2002

– 15 –


Trainer Profile: Bruce Smith

Certification and CredentialingDirect Support Professionals are an es-sential and vital community link forindividuals with a disability and theirfamilies. Their role in the lives ofpeople with disabilities can not be de-nied. On October 24, 2003, the U.S.Senate passed a resolution recognizingthe importance of direct support pro-fessionals. It states that direct supportprofessionals have made it possible forpeople with disabilities to live andwork in their communities.

Unfortunately, providers of supportsand services to individuals who dependon direct support professionals to leadfull lives typically draw from a labormarket that competes with other en-try-level jobs. These jobs require workthat is less demanding, both physicallyand emotionally, and often offerhigher pay and other benefits. Directsupport professionals’ jobs are thus notcompetitive in today’s labor market.

The Senate resolution recognizes theimpossibility of continuing to staff di-rect support positions by hiring peoplewho view the work as a temporary jobon their way to another career or a“quick fix” to pay bills until a betterpaying position becomes available.

The National Alliance for Direct Sup-

port Professionals has proposed a vol-untary, nationally-recognized creden-tial, which would improve supports topeople who rely on human services forassistance by strengthening the directsupport profession. The NADSP pro-posal states, “Essential to shaping a rig-orous, voluntary credential is the rec-ognition and acceptance of the bodyof skills, knowledge and ethics that rep-resent the spirit and essence of the di-rect support role in the contemporaryhuman service environment. Establish-ing these elements of a professionalidentity is critical to changing the im-age of direct support to a job that isrecognized within society and offersthe promise of primary life work.” Avoluntary credential, tied to compe-tency-based skills, increases the likeli-hood of attracting quality people to thefield and should stress the importantrole DSPs have in assisting consumerstoward self-direction.

This national credential could be re-newed regularly and kept up-to-dateusing a database. People with disabili-ties in need of a direct support profes-sional could use a statewide databaseto gain access to workers who have re-ceived an accredited credential beforescheduling an employment interview.

youths made inappropriatelife choices that broughtthem into the juvenile jus-tice system.

Many children in the penalsystem have fetal alcoholsyndrome or lead poison-ing; others have motherswho used drugs while theywere pregnant. Bruce wasinterested in working withthese young people be-cause of his own experi-ences. Growing up, his

friends were often incarcer-ated or victims of violencebecause of the dangerouslife-styles they lived. “Iknew there had to be a wayto circumvent kids fromgetting into this type oftrouble, and being victimsof violence,” Bruce says. “Iknew some of themneeded help they weren’tgetting at home.” Brucehas watched these youthsbecome productive andpositive after receiving edu-cational support and atten-

Bruce Smith’s work at theWayne County DetentionCenter gave him extensiveexposure to youths in-volved with the juvenile jus-tice system, and he noticedthat many had disabilities.He believes that growingup they lacked parents whowould advocate for theeducational support ser-vices that could havehelped them. Without pa-rental involvement these

The images you haveseen here on this and

the preceding pages useAmerican Sign Languageto finger spell the motto

“Working Together.”

This statement, it seemsto us, accurately reflectsa sentiment that should—and, in fact, must—

come to representthe attitude of

all those strivingto improve conditions

for consumers and directsupport professionals.

For, in truth,when all of us

—policy makers,professionals, DSPs,

consumers and allies—work toward the samegoals, our combined

strength is trulyunstoppable.

Bruce Smith presentstraining information.

– 16 –


10 Principles Guiding theEstablishment of aNational Credentialfor Direct SupportProfessionals Paper.NADSP. March 3, 1998

they can access to helptheir children.

Bruce believes that helpingparents is the most effectiveway to achieve positive out-comes for the children. Heand his wife have extensiveparenting experience as theproud parents of 13 chil-dren, several of whom havespecial needs. “We havechildren who range in agefrom 6 to 40 and five won-derful grandchildren,” saysBruce.

Bruce learned about Em-powerment Educationwhile employed at WayneState. He is an alumnus ofthe first train-the-trainerclass, and continues to pro-vide Empowerment Educa-tion training. “I enjoyteaching and I think thetraining teaches direct sup-port professionals valuableinformation that they inturn pass on to consumersand parents of childrenwho have disabilities,” headds.

AcknowledgmentsThe authors gratefullyacknowledge the assistanceof all those who consentedto be photographed. We areparticularly thankful to KathyFlowers, Abe Lindner, DebbieMorgan, Bruce Smith, andLaurie Thomas, who agreedto be profiled. Finally,we thank the staff of theDevelopmental DisabilitiesInstitute, especially MichaelBray, without whose helpthis report could not havebeen completed.

Sources citedBush, G.W. Executive Order

13217.Hall, P.S. & Hall, N.D. (2002).

Mental retardation, 40(1), 201-211.

Hewitt, A. & Larson, S.(1994). Policy Research Brief,(6)2. Institute on CommunityIntegration, University ofMinnesota, Minneapolis.

Larson, S.A. (1998). Presenta-tion made at Anchor AnnualConference, March 1998.

Michigan Assisted LivingAssociation. (2002). Mentalhealth provider wage &benefit survey.

Michigan League for HumanServices. (Report submittedOct. 17, 2003).

National Alliance for DirectSupport Professionals. (March3, 1998). Position Paper.

Souza, C. & Welsh RN-C, P.G.(2002). North Carolina MedicalJournal, 63(2), 110-111.

Teal, C. (2002). NorthCarolina Medical Journal,63(2), 102-105.

United States Department ofHealth and Human Services.(May, 2003). Report on short-age of long-term care workers.Retrieved from HHS website at:<http://www.hhs.gov/news/press/2003pres/20030520a.html>

tion from someone whocares about them.

After 20 years, Bruce left hisjob at the detention facilityto teach sociology andcriminology at Wayne StateUniversity. Nevertheless, hecontinues to volunteer atthe detention center andwith other programs thatinvolve children in the ju-venile justice system. Hecurrently facilitates a parentsupport group and spon-sors workshops to educateparents about supports

• A base of valid, consensus-drivencriteria, deriving from a masteryof and expertise in competency-based performance indicators.

• Credential competencies represent-ing a consensus of consumers, work-ers, families, employers, administra-tors, trainers, funders and educators.

• State or national credentials definedbased on competencies to help struc-ture career and education ladders forstudents and incumbent workers.

Listed below are some examples of philosophical, ethical and skills-based com-petencies that should be considered when developing a credential for direct sup-port professionals:10

• The direct support professional andthe consumer are partners. Thispartnership includes mutual respectand a collaborative approach, ratherthan the imposition of control.

• The role to be shaped by the directsupport credential is that of fully em-powered, expert practitioners whoembrace long-term direct servicework as their primary life’s work.

• Direct support professionals recog-nize that consumers’ social and com-munity networks are central to theirsuccess and that their own role seeksto strengthen, not replace them.

• The credential must be voluntary.Each DSP must be free to pursue aprofessional credential without ex-ternal pressure. Mandatory cre-dentialling could remove or dimin-ish consumer choice and/or lead toinflexible services and the imposi-tion of new burdens on all parties.

• The credential’s purpose is toencourage people to recognize—andselect—direct service as a primarylife work, not to exclude anyone.

• All key affected stakeholders mustpartner collaboratively to developand implement national credentials.

The content of the credential should include:10

• Integration with related learning ex-periences in secondary and post-secondary educational settings toincrease the exposure of youngpeople to human services atearlier ages.

• Investing in a credentialling processvia both financial support and re-structuring of training requirementsto align with credential criteria asa critical role for policy makers,industry leaders and public funders.


In the future . . .

In addition, the initiative will offer three new modules in the Direct Support Professional Training series in 2004:

So You Want To Be aDirect Support Professional

This session will introduce reasonableexpectations for anyone beginningwork with persons who have disabili-ties. Learner objectives will include:

• identify key tasks direct supportprofessionals must accomplish daily

• identify personality traits successfuldirect support professionals possess

• understand the role of the DSP inthe lives of people with disabilities

• learn about rewards and benefitsassociated with being a DSP

Sponsoring CommunityMentorship Opportunities for

People with Disabilities

This module teaches communitymentorship. Some DSPs choose tobring persons with disabilities into theirhomes to teach independent living skillsand prepare them to eventually moveinto their own homes. Objectives in-clude:

• Define the communitymentorship model

• Learn if community mentorshipis right for you

• Identify strategies to startcommunity mentorship

• Develop your own communitymentorship program

• Identify steps to the transitionplan and fading

Self-Determination, Part 2

This module will serve as a follow-upto the much requested “Self-Determi-nation: Our Right to Meaningful andFulfilling Lives.” The topic is teachingself-determination skills to people withdisabilities. Objectives are:

• Identifying the five principles ofself-determination

• Understanding the five principlesof self-determination

• Developing life goals incorporatingprinciples of self-determination

• Understanding DSPs’ roles in sup-porting others’ self-determination

Several of the current Empowerment Education Direct Sup-port Professional Training modules have recently updatedliterature and activities supporting what is new in evidence-based best practices in the field.

Future goals for the initiative include:

• Increasing training availability for DSPs residing in thestate’s Upper Peninsula

• Increasing training to culturally diverse DSPs.

Developmental Disabilities Institute • Wayne State University

4809 Woodward, Leonard N. Simons Bldg., Ste. 268

Detroit, MI 48202

Phone (313) 577-2654 • Fax (313) 577-3770

© 2004, WSU/DDI

www.wayne.edu/ddi

Produced in March, 2004

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