Recommendations for Minnesota s Personal Care Assistance Program From Focus Groups of PCA Consumers and PCAs

Transcription

1 Recmmendatins fr Minnesta s Persnal Care Assistance Prgram Frm Fcus Grups f PCA Cnsumers and PCAs Interim Reprt #2 Prepared fr: Minnesta Department f Human Services, Disability Services Divisin Submitted by: The Lewin Grup and the University f Minnesta s Institute n Cmmunity Integratin Submitted: June 24, 2009

2 Recmmendatins fr Minnesta s Persnal Care Assistance Prgram Frm Fcus Grups f PCA Cnsumers and PCAs Interim Reprt #2 Prepared fr: Minnesta Department f Human Services Disability Services Divisin June 24, 2009

3 Table f Cntents I. OVERVIEW OF THE PROJECT/INTRODUCTION... 1 II. METHODS... 2 A. Fcus Grup Participant Sampling Strategies... 2 B. Apprval fr Study frm Institutinal Review Bards at the University f Minnesta and the Minnesta Department f Human Services... 3 C. Participant Recruitment... 3 D. Fcus Grup Facilitatr Guides and Questins... 4 E. Cnducting Fcus Grups f PCA Recipients and PCAs... 6 III. DATA ANALYSIS... 7 IV. RESULTS... 8 A. Fcus Grup Participants... 8 B. Key Findings V. PRELIMINARY RECOMMENDATIONS AND OPPORTUNITIES FOR ACTION APPENDICES Appendix A: Fcus Grups Appendix B: Sample Fcus Grup Flyers Appendix C: Mderatr Guides i

4 I. Overview f the Prject/Intrductin The Minnesta Department f Human Services (DHS), Disability Services Divisin cntracted with The Lewin Grup (Lewin) t cnduct a study f the infrastructure f the State s Medicaid State Plan Persnal Care Assistance (PCA) prgram. This study analyzes the drivers f Medical Assistance expenditures in the State s PCA prgram and prvides recmmendatins t infrm legislatin t strengthen the PCA prgram. While the study fcuses primarily n PCA State Plan services, imprtant cnsideratins include hw ther Medical Assistance Prgrams (e.g., hme and cmmunity-based waiver prgrams) prvide PCA services, and the interactin between thse prgram requirements and the PCA State Plan prgram. This reprt is the secnd f several interim reprts that Lewin will submit t DHS, in additin t a cmprehensive final reprt. This secnd reprt includes findings frm a series f 14 fcus grups, cnducted by the University f Minnesta s Institute n Cmmunity Integratin (U f M), with recipients f PCA services and PCA wrkers in a variety f Minnesta Medical Assistance prgrams ffering PCA services. The purpse f cnducting these fcus grups was t hear frm wrkers abut their experiences prviding PCA services, and frm service recipients abut their experiences receiving PCA services. This reprt prvides: a descriptin f the methdlgy used t btain this data (thrugh the fcus grups); findings frm several tpical areas such as services delivered/received, quality f services, wages/benefits, educatin/training, and family members as PCA wrkers; a summary f fcus grup participants recmmended key changes t imprve the Minnesta PCA prgram; and interim recmmendatins t imprve and strengthen Minnesta s PCA prgram. The first interim reprt fcused n a natinal scan f PCA prgrams, analysis f Minnesta PCA prgram enrllment and expenditure data, findings frm interviews with state fficials in Minnesta and ther states with PCA prgrams, stakehlder interviews, and preliminary recmmendatins fr the State. The remaining interim reprt will fcus n: infrmatin n prvider agency perspectives and related recmmendatins t strengthen and imprve prvider-related cmpnents f the prgram, and analyses f the types f living arrangements in which individuals receive PCA services and recmmendatins surrunding the prvisin f PCA services in thse arrangements. The final reprt will synthesize the analyses f the several interim reprts and make additinal recmmendatins t strengthen and imprve Minnesta s PCA prgram. 1

5 II. Methds A. Fcus Grup Participant Sampling Strategies The initial sampling methdlgy, develped in cllabratin with the Disability Services Divisin, included cnducting a ttal f 10 fcus grups (six Persnal Care Attendant (PCA) cnsumer fcus grups and fur PCA wrker grups) with a prjected ttal f apprximately 80 participants. When cmpleted, hwever, a ttal f 14 fcus grups (eight PCA recipient and six wrker fcus grups) were held. This increase in the number f fcus grups frm what was riginally planned was designed t enable us t reach ur target f 80 participants, despite the lw attendance at the initial tw fcus grups 1. Appendix A prvides a list f fcus grups held, their lcatin, and attendance. T be reflective f the diversity f the PCA prgram, the fcus grups were held in rural, urban, and suburban areas thrughut Minnesta. In designing the fcus grups, emphasis was als given t ensuring that individuals selected fr participatin wuld represent a diverse ppulatin (e.g., race/ethnicity, gender, age, wrking status, urban/rural, and disability sectr) and the wide variety f living arrangements experienced by recipients f PCA services (e.g., shared husing, cngregate husing, prvider-wned husing, crprate fster care). It was als imprtant t include individuals wh access PCA services thrugh the varius prgram ptins ffered in the Medical Assistance Prgram (e.g., managed care, fee fr service, waiver, and PCA Chice) s that experiences shared by participants reflected the wide range f PCA service ptins in Minnesta. Additinally, the PCA prgram serves peple with varied types f health and human service needs. Thus, it was imprtant t ensure that fcus grup participants included peple with intellectual/develpmental disabilities, mental health issues, physical disabilities and peple wh had needs due t aging. Cnsumer fcus grups included bth individuals with disabilities wh receive services and parents/family members wh are the legal representatives f children and adults wh receive PCA services. Including parents and family members was particularly imprtant t ensure that ur analysis als reflected the perspectives and experiences surrunding the delivery f PCA services in Minnesta t children with special health care needs, and children with intellectual and develpmental disabilities. While the children are the service recipients, their legal representatives (which may include parents, guardians, and ther family members) are thse wh guide and direct the wrk f the PCA. The fcus grup participants represented varius service type, demgraphic and rural/urban perspectives. Hwever, it is imprtant that the reader understand that the sampling methds used enables us t reprt general findings abut the entire fcus grup ppulatin and nt specific findings abut specific grups/types f PCA users and wrkers. Findings presented in this reprt represent that varius perspectives f all participants; cmparisns between specific 1 The lw attendance is likely explained by reduced recruitment time resulting frm delayed Institutinal Review Bard apprvals as well as winter weather cnditins. 2

6 types f participants are nt made due t the methds used in gathering infrmatin and the small sample size. B. Apprval fr Study frm Institutinal Review Bards at the University f Minnesta and the Minnesta Department f Human Services The purpse f Institutinal Review Bards (IRBs) is t ensure that research is cnducted in an ethical manner, that the prper cnsent is prvided by research subjects, and that the cnfidentiality and privacy f infrmatin pertaining t research subjects is maintained. As a result, cllecting data frm fcus grup participants required that we receive IRB apprval. Due t the fact that tw entities were invlved in this prject, apprval frm bth the University f Minnesta and the Minnesta Department f Human Services (DHS) Institutinal Review Bards was needed. Cnsent frms, mderatr guides fr the fcus grups, and the U f M and DHS IRB applicatins were reviewed by prject staff and DHS, and then submitted fr apprval by bth the U f M and MN DHS IRBs. The University f Minnesta IRB requested several changes t the cnsent frms and ther dcuments as well as t the prcess fr recruiting ptential fcus grup participants. Hwever, the key change requested by the U f M IRB was that the initial cntact with r infrmatin abut the PCA Prject needed t cme frm the University f Minnesta (instead f frm a prvider rganizatin as prpsed). This mdificatin necessitated that an emplyer r service prvider make initial cntact with ptential fcus grup participants and encurage them t cntact the rganizers f the fcus grups at the U f MN t btain infrmatin abut the fcus grups. This made recruitment f participants mre challenging as the rganizers had t wait until an interested ptential participant cntacted them fr infrmatin abut the fcus grups. The primary change requested by the DHS IRB was that the amunt f cmpensatin fr a participant be reduced frm $30 per 90-minute fcus grup t $25. The U f M respnse was t use $25 gift cards instead f $30 gift cards. Final apprval fr bth IRBs was btained in late December The methds apprved by bth IRBs required that data transcripts remain cnfidential and nly be available t the researchers at U f M. In additin, they required that data cllected be stripped f any identifying infrmatin. As a result, demgraphic data was cllected prir t the fcus grups and transcript recrdings did nt ccur until after participants identified themselves during the intrductry sessin f the fcus grup. This data privacy prmise makes it impssible t cnnect demgraphic and service type infrmatin t specific statements made by participants when analyzing the data. Thus, it is impssible t cmpare participants perspectives based n demgraphic infrmatin and service type. C. Participant Recruitment A variety f strategies were used t recruit participants including: calls t prviders and cnsumers based n lists prvided by DHS, netwrking thrugh the Cnsrtium f Citizens with Disabilities (CCD) members t identify ptential cnsumer and wrker participants, and direct cntract with cunty service crdinatrs/case managers t identify ptential participants. 3

7 Recruitment success was due in part t the creativity, patience, and persistence f many PCA prvider rganizatins. These prvider rganizatins used a variety f appraches t assist U f M staff in identifying ptential fcus grup participants, including: Inserting PCA prject flyers in newsletters fr recipients and in paychecks fr PCAs; Distributing the flyer in a pst card frmat t encurage participatin; Sending a letter r an with an attached PCA prject flyer; Psting the study flyer n the agency bulletin bard; and Asking PCAs t distribute the flyer t the persns they supprt. Samples f the flyers used are included in Appendix B. Study participants were given a $25.00 gift card fr participating in the study. Infrmatin abut this incentive was included in the recruitment materials. In additin, participants were reimbursed fr mileage and any accmmdatins they needed t ensure their participatin. D. Fcus Grup Facilitatr Guides and Questins The University f Minnesta staff cnducting the fcus grups used Mderatr Guides designed specifically fr each type f fcus grup (e.g., PCA wrker and PCA recipient). These guides, which included an verview, purpse f the fcus grup, and instructins fr facilitating each type f fcus grup, were develped t ensure cnsistency in apprach and design. The Mderatr Guides are included in Appendix C. Prject staff and DHS identified several tpics fr the fcus grup discussins (Exhibit 1). The questins, prmpts, and fllw up questins were designed t yield imprtant infrmatin abut participants experiences, thughts, feelings, and ideas abut the strengths, challenges, and areas fr imprving the PCA prgram in Minnesta. Exhibit 1. Fcus Grup Tpics/Questins PCA Recipient Fcus Grups TOPIC Area 1: Quality f Services 1. What d yu use yur PCA fr? Hw des she r he assist and supprt yu in yur life? Prmpts: Think abut: In what areas f yur life des yur PCA prvide yu with supprt? Where are yu when they prvide yu with supprt? Hw d they assist yu in living yur life t the fullest? What wrks? What are the challenges? Fllw Up: What suggestins d yu have fr imprving PCA services available thrugh Minnesta s PCA prgrams s that they are the mst useful t yu? 2. What are yur thughts r ideas abut what and hw much chice and cntrl yu have abut the PCA services yu receive? Prmpts: Think abut: What des chice mean t yu? What des cntrl mean t yu? What is really imprtant t yu abut the type and amunt f cntrl yu want in yur life related t the PCA services yu need? Fllw Up: What suggestins d yu have fr imprving the type and level f chice and cntrl persns have fr the PCA services available thrugh Minnesta s PCA prgrams? 3. Tell us abut hw the PCA services yu receive help t keep yu safe and healthy? Prmpts: Think abut: What des being healthy and safe mean t yu? In what ways d yur PCAs supprt yu in 4

8 PCA Recipient Fcus Grups being healthy and safe? Fllw Up: What suggestins d yu have fr imprving the PCA services available thrugh Minnesta s PCA prgrams s that they better supprt yu in being healthy and safe? 4. What are yur thughts, experiences, and stries abut the quality f service yu receive thrugh Minnesta s PCA prgrams? Prmpts: Think abut: What des quality mean t yu? Hw d yu feel quality is measured? Wh can r must be held accuntable fr the quality f supprt yu receive the legislature, state agencies, cunty persnnel, yur PCAs? T whm d yu g t discuss cncerns yu may have abut yur quality f supprt? Fllw Up: What suggestins d yu have fr imprving the quality f care in Minnesta s PCA prgram? TOPIC Area 2: Staffing 5. What are yur thughts and experiences abut being able t be invlved in finding, chsing, keeping and training PCAs t prvide services that meet yur needs? Prmpts: Think abut: What are things yu d nw t find, chse, keep and train quality PCAs? What training wuld yu like PCAs t receive s that yur life is better? Hw d yu recgnize and reward yur PCAs fr ding quality wrk? Fllw Up: What suggestins d yu have fr develping r imprving the recruitment, hiring, rientatin and training activities in Minnesta s current PCA prgram? 6. Describe a situatin that invlves hw PCA services have r have nt been prvided t yu? Tell me abut a time when back up plans t prvide PCA services t yu were dne well? Prly? Prmpts: Think abut: The type, level, and quality f services yu receive. D yu get the amunt f PCA services that are authrized t yu? Why r why nt? Wh is/are the respnsible party(ies) fr back-up? What strategies d yur back-up plans include? Wh helps ut when back-up plans dn t wrk? Fllw Up: What suggestins d yu have fr imprving Service Prvisin and Back-Up Plans in Minnesta s PCA prgram? 7. What are yur thughts and feelings abut yur family members being able t be yur PCA and able t prvide PCA services t yu? Prmpts: Think abut: The benefits and challenges f family members being able t be a PCA. What it might be like fr yu as a service recipient t tell a PCA family member that she r he des nt d a gd jb as a PCA with certain tasks. Hw t ensure the PCA family member maintains cnfidentiality with the family member wh is a service recipient. Fllw Up: What suggestins d yu have fr imprving the prcess fr using family members as PCAs in Minnesta s current PCA prgram? PCA Wrker Fcus Grups TOPIC Area 1: Yur Wrk as a PCA 1. Tell us abut yur wrk as a PCA; what, where, hw and why d yu d this wrk? Prmpts: Why did yu chse t d this type f wrk? Where t yu g t d yur wrk, in what types f envirnments? Hw many hurs d yu wrk in what settings and fr hw many peple with supprt needs? Describe fr us a typical day at yur wrk; what are yur jb duties and respnsibilities? Fllw Up: What are the hardest things abut yur wrk? Best things? TOPIC Area 2: Cmpensatin and Benefits 2. What are yur thughts, feelings, and experiences abut wages and benefits fr PCAs in Minnesta s system? Prmpts: Think abut: Hw des yur wage and access t benefits affect yur life? Hw d they cmpare t the wages and benefits f thers in yur family, cmmunity and ther jbs? Fllw Up: What suggestins d yu have fr imprving the wages and benefits that PCAs currently receive in Minnesta s PCA prgrams? 5

9 PCA Wrker Fcus Grups TOPIC Area 3: Prvider Organizatin/Emplyer 3. In what ways des yur emplyer (the rganizatin in which yu wrk) supprt yu? What are yur experiences and stries abut receiving rientatin as a new PCA and training t meet the needs f service recipients? Prmpts: Think abut: What supprt d yu want but d nt receive? Hw des yur rganizatin/emplyer prvide yu with rientatin? What type f n-ging training d yu get? Fllw Up: What suggestins d yu have fr imprving the supprt yu get frm the rganizatin(s) in which yu wrk as a PCA? What suggestins d yu have fr develping r imprving rientatin and training activities in Minnesta s current PCA prgram? TOPIC Area 4: Family members as PCAs 4. What are yur thughts and feelings abut family members being able t be PCAs? Prmpts: Think abut: The benefits and challenges f family members being able t be a PCA. What it might be like fr a service recipient t tell a family member she r he des nt d a gd jb as a PCA with certain tasks. Hw t ensure the PCA maintains cnfidentiality with the family member as a service recipient. Fllw Up: What suggestins d yu have fr imprving the prcess fr using family members as PCAs in Minnesta s current PCA prgram? E. Cnducting Fcus Grups f PCA Recipients and PCAs University f Minnesta staff cnducted a ttal f 14 fcus grups (eight PCA recipient and six wrker fcus grups) acrss the state in Bemidji, Blmingtn, Brainerd, Duluth, Mankat, Minneaplis, Rseville and St. Paul cunties. Tw U f M staff facilitated the majrity f the 14 fcus grups (n tw ccasins fcus grups were cnducted simultaneusly and therefre nly had ne trained facilitatr). A PCA service recipient c-facilitated the recipient fcus grups. Each fcus grup lasted 90 minutes. Refreshments were served and participants were encuraged t netwrk and interact with ne anther. Grund rules fr participatin were reviewed with all participants and the facilitatrs ensured that all participants had a chance t talk and vice their pinins and share their experiences. Participants were active and respnsive in all f the fcus grups. 6

10 III. Data Analysis The data cllected during the fcus grups was digitally recrded using tw separate digital recrders t ensure that all participants wrds were heard and recrded. Each tape was transcribed. Tw U f M prject staff reviewed the data and identified preliminary cdes based n participant answers t each questin. Cdes are labels given t tpics that emerged frm the fcus grup data and were used t identify each time a tpic was identified in the data (e.g. lw wages, expensive health care benefits, c-wrker cnflict, health and safety, wrk hurs). The cding cmpleted by each researcher was cmpared t ensure cnsistency in the use f the cdes (inter rater agreement). Bth facilitatrs reviewed the data with the final cdes t identify themes acrss fcus grups. These themes are the key findings f the fcus grup study. 7

11 IV. Results A. Fcus Grup Participants There were a ttal f 80 fcus grup participants. These included 55 PCA service recipients, r legal representatives f service recipients wh were unable t participate n their wn behalf, and 25 PCA wrkers. Exhibit 2 presents the demgraphic and ther characteristics f the PCA wrkers and PCA service recipient/persnal representatives wh participated in the fcus grups. Characteristics f PCA Recipient/Representative Fcus Grup Participants Of the 55 PCA service recipient fcus grup members, 31 were adults with disabilities wh received PCA services and 24 were family members/legal representatives. PCA recipient fcus grup participants, wh were nt represented by their parents/legal representatives. Of the 55 PCA service recipients wh participated, 10 identified themselves as Native Americans, tw as Hispanic, ne Asian/Pacific Islander, tw African American, and the remaining participants (40) were Caucasian. Als, f the 55 service recipients wh participated (r were represented), 17 were individuals with physical disabilities, 19 had intellectual/develpmental disabilities, three had a traumatic brain injury and 16 identified as having mental health diagnses. Of the 31 actual adult service recipients (i.e., thse wh were nt family members/persnal representatives), 17 were female and 14 were male. Of the 24 participants wh were legal representatives, the verwhelming majrity were female (21 f them) and three were male. Als, mst f the children they represented were female (21 were female and 10 were male). It is imprtant t nte that sme f these legal representatives had mre than ne child wh received PCA services. The verwhelming majrity (44) f the 55 participants lived in an apartment r huse, 2 lived in crprate fster care and 9 indicated that they lived in shared husing. Funding streams identified fr these participants included Hme and Cmmunity Based Services, Fee fr Service, Managed Care and PCA Chice. Hwever, it is imprtant t nte that, while we asked participants t identify their PCA service type n the demgraphic frm they cmpleted prir t the fcus grups, it became apparent during the fcus grups that many participants did nt have a very clear understanding abut the prgram thrugh which they received PCA services (e.g., FFS versus managed care) r the PCA ptin (Chice vs. Traditinal). Characteristics f PCA Wrker Fcus Grup Participants PCA wrker participants ranged in age frm 20 t 66, and the majrity were female (19 were female and 6 were male). 8

12 Of the 25 PCA wrkers wh participated in the fcus grups, the verwhelming majrity (22) wrked fr a prvider rganizatin, and the remaining identified that they wrked independently. There were 18 Caucasian, 4 Native American, 2 Asian/Pacific Islanders and 2 African Americans. 2 Wrkers wh participated in the fcus grups delivered PCA services in PCA Chice, Hme and Cmmunity-Based Services, Managed Care prgrams, and Medical Assistance State Plan Fee-fr-Service. Hwever, it is imprtant t nte that while we asked participants t identify their PCA service type n the demgraphic frm they cmpleted prir t the fcus grups, it became apparent during the fcus grups that many participants did nt have a very clear understanding abut the prgram thrugh which they received PCA services (e.g., FFS versus managed care) r the PCA ptin (Chice vs. Traditinal). Exhibit 2. Demgraphics f Fcus Grup Participants Characteristic Ttal participants Participants with disabilities Family members/legal representatives f PCA recipients PCA Service Recipient Participants PCA Wrker Participants Age (range) Gender a/ Male Family members/legal representatives Child Adult independent Female Family members/legal representatives Child Adult independent Race/Ethnicity b/ Native American 10 4 Hispanic 2 African American 2 2 Asian/Pacific Islander 1 2 Caucasian n/a n/a The sum f race/ethnicity participant cunt fr PCA wrker fcus grup participants is greater than the ttal number f PCA wrkers wh participated (25 ttal participants cmpared t 26 by race/ethnicity) because sme wrkers identified themselves as mre than ne race/ethnicity 9

13 Characteristic PCA Service Recipient Participants PCA Wrker Participants Disability Type Physical disability 17 na Develpmental disability 19 na Mental Health 16 na Traumatic/Acquired Brain Injury (TBI/ABI) 3 na Living Arrangement Hme/Apartment 44 na Crprate Fster Care 2 na Shared Husing 9 na Emplyer Type Prvider Organizatin na 22 Independent PCA na 3 a/ Family members/legal representatives wh participated in the PCA recipient fcus grups prvided their gender and the gender f the child r children they represented. Nte that the ttal number f male and female fcus grup participants is greater than 55 due t the fact that sme legal representatives had mre than ne child in the prgram. b/ The sum f race/ethnicity participant cunt fr PCA wrker fcus grup participants is greater than the ttal number f PCA wrkers wh participated (25 ttal participants cmpared t 26 by race/ethnicity) because sme wrkers identified themselves as mre than ne race/ethnicity. B. Key Findings We cllected f a wide range f experiences, perspectives, challenges and recmmendatins fr imprving Minnesta s PCA prgram, which we summarize belw. PCA Wrker Vice The tpics that emerged frm PCA wrkers included wage/benefit levels, PCA services prvided t supprt families and individuals, wrk life challenges, training/supervisin/career develpment, and issues surrunding family members serving as PCAs. These tpics are described in mre detail belw: PCA wrkers expressed lack f benefits and lw r incnsistent wages acrss PCA rganizatins and prgrams as majr emplyment issues PCA wrker participants strngly viced cncerns abut hurs wrked, wages, and benefits. The range f hurs wrked by the PCA participants varied widely, frm eight hurs a week t 16 hur days wrked seven days a week. Many wrked hurs a week. Sme f the wrkers wh wrked lng hurs did s t earn enugh mney t make ends meet and a few expressed that they wrked these lng hurs ut f cmmitment t the persn with a disability they were serving because that persn wanted nly them as an emplyee. Many PCA wrkers cmplained f having t wrk split shifts, and spending ne-third f their day traveling frm ne recipient s hme t the next (mre ften than nt withut pay). In rder t get enugh hurs t make ends meet, wrkers nted that they usually have t prvide PCA services t 10

14 mre than ne recipient. Many thers expressed that they had ther paid jbs nt invlving PCA service delivery. PCA Stry #1: I am a single Mm with a yung by wh has a develpmental disability. He can walk with a walker and independently uses the tilet. My PCAs help mstly with fllwing the plans develped by prfessinal therapists physical, ccupatinal and speech. I als train the PCAs in many f the specific tasks related t stretching, walking, sitting, all f which are very imprtant safety and health situatins. The PCAs als help my sn with persnal hygiene such as shwering, using the bathrm, brushing teeth and s frth. They are pretty gd with encuraging my sn and being there t prvide supprt when he needs it. The PCAs als help me with ideas fr making math fun, ding a variety f hmewrk activities, and just having fun with him utside playing games and ding ther recreatinal activities. What is very frustrating fr me is the strng bnds that are created by my sn and his PCAs and me and then, they leave after six mnths r a year. It is s hard n him and I have t spend a gd deal f time lking fr ther persns t replace the PCAs. Als, what is a real challenge is the number f peple I have t interview t finally find ne wh is will be a quality persn fr my sn, ne wh is prfessinal in their apprach, has gd manners, uses grammar that is apprpriate, listens carefully t my instructins, and uses their ideas t help imprve my sn s life. I used t use several different traditinal PCA agencies but had s many pr experiences and lack f training with the PCAs they sent me that I switched t PCA Chice. This ptin allws mre freedm in finding and chsing PCAs and des make it easier t pay PCAs a bit mre mney than traditinal agencies but als means mre time and energy needs t g int finding and training gd DSPs and ding sme f the paperwrk that the traditinal PCA agencies usually d. I wuld recmmend that a high pririty fr the future f the PCA prgram in Minnesta wuld be t maintain the flexibility f the prgram because there are s many different needs and circumstances f the persns receiving and prviding PCA services. Als, prviding cmpetitive wages and benefits is a very strng need if PCAs are ging t cnsider this type f wrk and stay with their emplyer fr a lnger perid f time. PCA wages varied widely, frm $10.00 $15.00 hurly. Wrkers shared that there was incnsistency in the amunt f pay they received, which culd depend n the type f service delivered, and the rganizatin r recipient fr whm they wrked. Nearly all PCAs indicated that they als wrked hurs fr which they are nt allwed t bill, and therefre fr which they were nt paid (e.g. wrking hurs beynd the ttal number authrized fr the persn they supprt, running errands fr the persn they supprt but withut that persn in their car). They als indicated that they did nt receive vertime pay fr hurs wrked in a given week beynd 40. Several wrkers suggested that PCAs wh supprt recipients with higher supprt needs (e.g. severe challenging behavir r physical demands) shuld be cmpensated with higher wages. Sme PCA wrkers stated that they were reimbursed fr sme mileage (e.g. t/frm medical appintments r travel in between clients), thers were nt reimbursed fr any mileage thugh they had similar travel experiences. Nne f the wrkers were reimbursed fr mileage t take PCA recipients t/frm cmmunity activities. I dn t have health insurance, I just g t the emergency rm when I get sick. 11

15 Wrkers had varied experiences with benefits ffered by their emplyer. Nearly all wrkers indicated that they were either nt ffered health insurance benefits, r that the insurance ptins they were ffered were t expensive, and s they did nt utilize them. Many were withut insurance, several said they just g t the emergency rm when they are sick, sme said they have secnd jbs with health benefits, and thers had health insurance thrugh a spuse r the Veterans Affairs. PCAs expressed that they prvide a wide array f services and supprts t cnsumers, thus playing an imprtant rle in the lives f the recipients they serve. PCA wrkers were asked t identify the types f services and supprt they prvide t peple wh receive PCA services. They identified a wide variety f tasks representing a vast array f jb duties. These tasks als clearly emphasize the imprtant rles that PCAs play in the lives f peple wh receive these services. These tasks, which we describe in mre detail belw, include, but are nt limited, t: Assisting recipients with daily life activities; Assisting recipients with health-related tasks and accessing health care; Prviding physical and behaviral interventins; and Supprting recipient s integratin in their cmmunities. PCAs prvide a variety f supprts in the area f activities f daily living, including: supprting recipients with persnal hygiene and grming; assisting recipients with husekeeping by cmpleting tasks such as sweeping, mpping, dusting, cleaning the bathrm, ding dishes and cmpleting laundry; and assisting recipients with grcery shpping, cking and eating. PCAs als prvide a wide variety f health-related tasks, including: prviding supprt t peple wh use G tubes including cleaning, maintenance and mnitring f the G tube; maintaining catheters; assisting with the dispensing f medicatins, mnitring and implementing medicatins t treat a variety f health issues such as diabetes; and assisting recipients in ging t medical appintments and btaining their medicatins. PCAs carry ut interventins and treatments such as range f mtin, physical activities and ther interventins requested by physical and ccupatinal therapists. These include, fr example, perfrming cmplete psitining, lifting and transferring supprt, and wrking t prevent pressure sres and ther prblems. Other therapy-related activities include implementing cmmunicatin prgrams, and using augmentative and alternative cmmunicatin strategies t supprt peple t imprve and use their cmmunicatin skills. PCA wrkers als described their rle in supprting recipients wh have challenging behavir and cmmunicate their needs and wants thrugh their challenging behavir, including prviding re-directin, setting limits, supprting individuals thrugh manic episdes and preventing prevent prperty destructin, self-injury and harm t thers. 12

16 PCA Stry #2: I am an lder man wh is the PCA fr my daughter wh is a yung adult with a develpmental disability. Initially, I had a PCA hired thrugh an agency and experienced a lt f things that I didn t like s I decided t give up my jb and be her PCA s I culd prvide her a higher quality f care and a better life. My daughter has many cmplex medical needs such as feeding her every 3 r 4 hurs thrugh a pump and nly has a small percentage f her mtr skills s I need t transfer her frm the bed t a wheel chair r frm the wheel chair t the cmmde. Because she is my daughter I find extra ways t d things fr her and dn t just fllw the manual like cmbing her hair in a certain way that makes her smile, rubbing her with ils and ltins, and s frth. T be sure, it is very challenging with my wife wrking with her during the day, and I wrking with her in the evenings t make sure the feeding pump cntinues t wrk smthly. I als think I advcate mre strngly fr my daughter than a nn-family PCA wuld d. I think that PCAs shuld get paid mre and receive benefits like LPNs because the wrk we d is s difficult and challenging and the peple we wrk with are s vulnerable. Als, just like ther prfessins like nursing and scial wrkers need t be certified, I think PCAs shuld get certified. Anther cncern f mine is that agencies need t d a better jb f matching a PCA with the needs and wishes f families r adults wh hire their wn staff. Dn t place a PCA wh des nt have the skills r has prblems with yunger kids int a hme where he is asked t help a family with several children with behavir prblems. A final thught is I think that family members being a PCA shuld be cnsidered a first chice if they get alng well tgether, listen and fllw instructins f their family member, and if they really want t help ut their family member. Families can burn ut s easily and quickly prviding care and cmfrt bth as a caregiver and parent; having anther trusting and lving family member d respite care n a weekend is a gd way t stay fresh. Many PCA wrkers described hw they supprt peple t be mre integrated int their cmmunities by teaching them t participate in recreatin and leisure activities such as ging t the mvies, swimming, sprting events, church, berry picking, and playing bing. They als supprt families by making it pssible fr families t spend time tgether and t g t events at schl and in the cmmunity. When asked the best thing abut being a PCA, nearly always, wrkers cited the clse relatinship that develps with the recipient t whm they prvide supprt. The feeling that the PCA wrker is wanted, needed, and appreciated by the recipient was identified as a primary reasn they chse this prfessin. Wrkers indicated that they were als drawn t PCA wrk fr a variety f reasns sme initially wanted t be Certified Nurse Assistants (CNAs) while thers gt int the wrk because f the recipient they supprt. Sme wrkers explained that they had becme PCAs because they were lking fr a jb and had n cnnectin r specific interest in the wrk. Hwever, ver time they develped cnnectins t the peple they supprted and grew t like the wrk. PCA wrkers expressed challenges in wrk-life balance and wrking with clients with challenging behavirs. When asked abut the challenges being a PCA pses, PCAs wrkers identified balancing wrk and the need fr time with their wn families as ne f their greatest challenges. Many PCA wrkers expressed that they had t give up time with their children and family members 13

17 because their client needed them t wrk during times when they therwise wuld be with their family members. Lyalty t the persn served and the need fr full time hurs seemed t be the mst significant surces f cnflicts related t finding wrk and hme life balance. Several PCA wrkers als discussed hw difficult it was t prvide supprt t recipients wh have challenging behavir, wh cmmunicate their needs and wants thrugh their challenging behavir, and wh can hurt yu physically. These wrkers supprted peple with varius types f disabilities (e.g. intellectual and develpmental disabilities, mental health) and felt illprepared and experienced a lack f supprt frm emplyers in knwing hw t prvide behaviral supprt. They shared that they smetimes experience stress and burnut due t the demanding nature f the jb. PCA wrkers described vastly differing experiences with regard t training, career develpment, recgnitin and supervisin frm their emplyer. PCA wrkers described vastly differing experiences with respect t hw their emplyer trained them t be PCAs. Sme had abslutely n training r rientatin and were just expected t deliver supprt. Others received a limited amunt f rientatin/training frm their emplyer, including fr example, being asked t read a PCA manual, shadw anther PCA, cmplete answers t questins that were prvided t them with their paycheck and turn them in t their emplyer, r learn specific skills frm hspital staff befre a client is discharged frm the hspital. Sme PCAs received three hurs f training befre wrking as a PCA n tpics such as rtating a persn in bed, changing bed cvers, washing clthes, assisting with tileting and helping the persn get in/ut f a wheelchair. One area in which many PCA wrkers expressed the desire fr mre training was in wrking with recipients wh have challenging behavir and mental health issues. Mst wrkers indicated they never received this type f training, but many supprted individuals wh had challenging behavir r wh had mental health cnditins fr which they were nt prepared t supprt. Nearly all wrkers expressed that they wuld like mre pprtunities fr training and educatin. They indicated that they felt they culd gain mre knwledge and acquire mre skills that wuld assist them in prviding better supprt t PCA service recipients thrugh training. 14

18 PCA Stry #3: I am an lder male wh has been a PCA fr abut thirty years and abut half f thse years exclusively with a middle-aged gentleman wh has a disability and wh uses a wheel chair fr his mbility. As a PCA, my respnsibilities include waking him up in the mrning, ding his tileting, brushing his teeth, cmbing his hair, shave and dress him, ck meals, and feed him. He enjys ding many activities in the cmmunity such as attending sprting events, participating in cultural events, ging fr a picnic in the park, and ding a wrkut at a fitness center. He likes t have friends ver s I ck the meal and drive him t his friends when they reciprcate the gettgethers. Because f his desire fr a strng and active scial life, I am his driver and assistant t him with his cmmunicatin with thers. Befre I became a PCA, I wrked as the wner f a business but fund it unfulfilling. I had a friend wh was a PCA and that led me t trying this type f wrk. I d PCA wrk because I think I can and d make a difference in peple s lives. With my current jb as a PCA, I wrk many hurs beynd the hurs I am paid because f the strng bnds with him. I experienced a number f challenges with the earlier PCA agencies that I wrked fr such as nt getting enugh mney t live n. I knw there are PCAs ut there wh d nt d a gd jb, are nt well trained, and think that getting persns up in the mrning, helping t shwer, clthe, and feed them is all there is t the wrk. S, pay thse wh d exemplary wrk mre mney and either train r help direct the nn-exemplary PCAs t a different type f wrk. Prviding affrdable health care insurance is anther benefit that shuld be explred fr PCAs. Anther area is the lack f regular nursing supervisin f my wrk. They are suppsed t prvide supervisin and guidance abut every 6 weeks r s but I nly see her a cuple f times a year. I d like my current emplyer because they prvide sme training, make insurance available (even if nt affrdable) and d prvide at least an adequate wage (but nt livable). Few wrkers were able t describe ways in which their emplyer recgnized them fr a jb well dne. A few PCA wrkers were emplyed in rganizatins that hsted recgnitin events r celebrated tenure benchmarks, but mst reprted n recgnitin r attempts t shw value and appreciatin t them as emplyees. Additinally, mst f the wrkers said they received little t n supervisin and that n ne really ever watched them d their wrk. They relied mst heavily n feedback frm recipients they served r parents f recipients. Many indicated that they thught smene was suppsed t cme and bserve them nce a mnth but that they rarely if ever had heard frm r seen anyne frm the rganizatins in which they emplyed supervised them. PCAs viced mixed views and pinins abut family members prviding PCA services t their lved ne. PCA wrkers had mixed experiences and pinins abut Wrker Suggested Key Changes: family members being paid t prvide PCA services. Affrdable health insurance. Many wrkers expressed that family members wuld Imprved wages. make the best PCAs because they knw the recipient Pay scales t reward expertise. best, and lve and trust them. Others expressed cncern Increased cnsistency in pay abut family members taking advantage f the recipient, Mre and better training. crssing persnal/prfessinal bundaries and giving Certificatin f PCAs. themselves the best hurs while leaving the wrst hurs fr the PCAs that wrk fr an rganizatin. Sme f these wrkers had actually bserved and 15

19 experienced situatins in which family members had prvided PCA services and their expressed pinins were based n these experiences. Others seemed t be speculating abut what it might be like if a family member prvided PCA services. PCA wrkers expressed the need fr key changes in the areas f affrdable health insurance, wages, and training, t imprve Minnesta s PCA prgram The PCA wrkers were asked t share their ideas fr a key change that wuld imprve PCA services in Minnesta. Nearly unanimusly, PCA wrkers expressed the need t have affrdable health insurance. This was their greatest pririty. They als expressed the need fr imprved wages and felt passinate abut hw paltry their pay was when cnsidering the enrmus respnsibilities f their jb. Many indicated that the pay was nt adequate given that they were prviding supprt t Minnesta s mst vulnerable citizens. Several PCA participants suggested the need fr pay scales that rewarded wrking with peple wh have greater supprt needs, such as challenging behavir and severe physical and medical needs. PCA wrkers als expressed the desire t have mre cnsistency in pay acrss rganizatins and PCA service types (e.g. fee-fr-service, private, PCA chice, managed care). Several participants were surprised by the variatin in wages when participants wh lived in the same cmmunity shared their wages during the fcus grups. PCA wrkers identified the need fr mre and better training. Several suggested that Minnesta require certificatin fr PCAs. Several suggested that greater pay be prvided fr wrkers wh are certified. One PCA wrker suggested the building f a wrker registry that wuld match peple wh need services with wrkers wh can prvide the service. PCA Service Recipient (Cnsumer) Vice PCA service recipient fcus grups included bth recipients directly receiving the services and supprts f the PCA, as well as persnal representatives f individuals wh receive PCA services (e.g., parents, guardians, ther family members). Fr purpses f this discussin, unless therwise specifically stated, we refer t them cllectively as PCA recipients. Belw we discuss their cllective experiences and perspectives expressed during the fcus grups. Tpics that emerged frm PCA recipients include PCA wage/benefit levels and PCA hurs f wrk, services PCAs prvide t supprt them and their families, the psitive and challenging aspects f PCA Chice versus traditinal PCA prgram ptins, challenges in recruiting and retaining PCA wrkers, quality f services, and having family members serve as PCAs. PCA recipients identified lw wages and lack f access t affrdable benefits as a barrier t finding and keeping gd PCAs. Nearly all f the PCA recipients identified lw wages and lack f benefits such as affrdable health care, paid time ff and vertime as imprtant factrs that cntribute t their inability t find and keep gd staff. Several shared stries f lsing PCAs because they fund a jb with better pay r access t emplyer paid benefits. Recipients were passinate abut these issues and several expressed that PCA wrkers needed t be treated as prfessinals and have the benefits that g with their high levels f respnsibility. 16

20 PCA recipients described a wide array f services and supprts prvided by the PCAs, that are very similar t thse described by the PCAs themselves. PCA recipients described jb duties f their PCAs that are very similar t thse described by the PCA wrkers themselves, including: Assisting them with daily life activities; Assisting with health-related tasks and accessing health care; Supprting integratin in their cmmunities; and Prviding physical and behaviral interventins, in particular t their children. In the area f activities f daily living, they described that the jb duties perfrmed by their PCA included helping them cmplete persnal hygiene such as getting dressed/undressed, shwering, washing/cmbing/styling hair, bathing, tileting, cutting finger nails, shaving, mnitring skin cnditins, putting n ltin/creams, helping peple gain access t things they need and brushing teeth. Husekeeping tasks were described as sweeping, mpping, caring fr pets, cleaning the bathrm, ding laundry and cking. While many service recipients indicated that their PCA wrkers did whatever they needed and wanted them t d, thers shared stries f wrkers refusing t assist with tasks that did nt invlve traditinal daily living skills (e.g. pet care, running errands). Many PCA recipients described their PCAs as helping them (r their family member) access services in their cmmunity and participate in cmmunity activities. Activities included shpping fr grceries, clthes, r ther needed items, and participating in leisure activities such as ging t sprting events, recreatin and cultural activities. Recipients expressed that PCAs played significant rles in peple s lives by helping them imprve their health and stay healthy. Recipients described their PCAs rles include taking them t/frm dctr and specialist appintments (smetimes great distances away if the I wuldn t be here and able t live by myself withut PCA care. PCAs kind f save us as a family. persn lives in a rural area), assisting them with range f mtin and ther mbility exercises, transferring and lifting them when they need assistance t prevent injuries and sres, and using assistive technlgy and equipment t help them get arund their hmes and cmmunities. Recipients expressed that PCAs prvide daily supprt that assist peple in cmpleting everyday tasks; they d s by develping supprtive relatinships that inspire and mtivate the persn t d and try new things. Recipients f services talked abut the lng-term relatinships they have had with wrkers and hw the relatinships ften are a mtivating factr fr them t d what they need t d t get thrugh their day and their lives. Parents/family members described the imprtant rle PCAs play in helping them with their children that have challenging behavir r severe medical cnditins in a way that allws the parent/family member t have a much needed break. Withut this assistance and supprt sme parents/family members described their reality as ne in which their child/family member wuld be unable t remain in the cmmunity because the parent/family member wuld burn ut. Many parents described situatins where they incurred a physical injury frm 17

21 lifting, transferring, and carrying and mving their family member with a disability. These parents expressed that they had t have assistance frm PCAs because they n lnger culd prvide the physical care and, withut PCA assistance, they wuld n lnger be able t care fr their child at hme. PCA recipients favred the PCA Chice prgram in terms f level f cntrl and flexibility ver the activities the PCA perfrmed, but expressed challenges with their emplyer respnsibilities, and lack f supprt. The PCA recipients wh participated in these fcus grups cllectively had a variety f experiences with PCA service ptins. Many had experiences with bth PCA Chice and mre traditinal mdels f PCA services. Many cnsumer participants indicated that PCA Chice allwed mre flexibility n hw t use their service allcatin, and when t use their PCA services because they were nt relying n an rganizatin t send staff. Cnsumers shared a feeling f having mre cntrl and being able t ask the PCA d t what they wanted and expecting them t d it. Several shared psitive feelings abut being able t hire and fire their PCA staff if they were nt qualified r made a bad decisin. At the same time, recipients indicated that under PCA Chice, they receive little assistance frm an agency with emergency situatins (e.g. parent gets sick r a PCA leaves suddenly) and much f the burden f the paperwrk, interviewing and hiring falls t the recipient wh may nt have experience r knwledge with hw t d these imprtant tasks. Mst expressed a desire t have supprt and assistance thrugh resurces, greater training and individualized supprt frm the state r an entity respnsible fr prviding such supprt. PCA recipients expressed mixed experiences regarding the traditinal PCA prgram ptin. Several PCA recipients indicated that using mre traditinal mdels f PCA services gives them greater supprt frm the rganizatin that can assist with prblem slving and talking with PCAs abut prblems and perfrmance issues. Many reprted liking the assistance rganizatins prvided with finding and disciplining PCAs. Recipients wh use this mdel expressed that they felt they had better chances f finding back up staff frm their rganizatin when their assigned PCA was absent. Many f the traditinal PCA service recipients expressed that they were als finding their wn wrkers and that the rganizatin hired the peple they wanted them t hire and that the rganizatin pretty much allwed them t guide and direct their PCA s wrk. In sme ways, the stries frm these recipients sunded identical t thse f peple talking abut their experiences with PCA Chice. Other recipients had very pr experiences with mre traditinal PCA services indicating that rganizatins take n actin when a PCA is nt perfrming well, r rganizatins d nt take any care in selecting the type f PCA t supprt a recipient, s lng as ne is prvided. Fr example, several recipients expressed displeasure with the quality f PCAs that were sent t them by traditinal PCA prvider rganizatins. N participants expressed any cncerns with retaliatin r a fear that if they cmplained abut a wrker(s) the rganizatin wuld make it mre difficult fr them r wuld nt send new 18

22 wrkers. Participants shared that when they had prblems, they felt cmfrtable sharing these prblems and in mst situatins their rganizatins were respnsive. PCA recipients indicated that it is imprtant fr the PCA t have smething in cmmn with the recipient, as well as their family members, and that peple need t bserve and mnitr the interactins between the PCA and the recipient t determine if there is a gd match. If there is nt a gd match then recipients need t be able t enfrce a change n matter the type f PCA services delivered. PCA recipients cmmunicated the imprtant and active rle that PCAs play in helping them stay healthy and safe. Recipients expressed that PCAs play imprtant rles in keeping them safe and healthy, including: practively bserving and sharing with the recipient their perceptins abut changes in recipients physical r health cnditin; mnitring medicatins and accmpanying them t many medical appintments; and taking an active rle in helping them exercise and live active lives in their cmmunities (which recipients stated as being a significant cntributin t individual health). Several recipients talked abut hw the tenure f a PCA wrker leads t them t being mre knwledgeable abut the cnsumer s health cnditins and risks. Similar t the message heard frm PCAs themselves, recipients (peple with disabilities and family members/legal representatives) described their PCAs as prviding supprt and interventin with challenging behavir t reduce incidents f harm t self and thers..he definitely wuld have been institutinalized at a yung age if we had nt had PCA services. Several recipients talked abut hw calming their PCA was t them and the imprtance f their relatinship. PCA recipient perspectives reflected similar challenges expressed by wrkers with respect t the hurs wrked. PCA recipients discussed hw the schedules that their PCAs have can result in them being verwrked, r getting rutines mixed up because they wrk fr s many peple. Additinally, nearly every PCA recipient was able t share a stry abut a time when a PCA did nt shw up t wrk and hw this resulted in the recipient staying in bed all day, becming dehydrated, nt getting fd, r missing wrk r ther imprtant scial engagements. Others discussed hw the lack f flexibility with hw their dllars are spent prevents them frm accessing ther health and safety ptins such as cell phnes r 24 hur emergency supprt, which can be critical when n PCA is available. PCA recipients had mixed experiences with the quality f PCA services which they receive. Recipients experienced a mix f service quality ver the years, bth psitive and negative. Examples prvided by recipients f hw PCA services have psitive utcmes include: a PCA cming t wrk at 3:00am t take a persn t the hspital; PCAs being able t take directin frm the cnsumer/family member and mdify the way they deliver service based n cnsumer desire r need; PCAs that ffer help even when it is nt asked fr; PCAs that wrk 19

23 extra hurs (even withut pay) t help smene when they have a need; and PCAs being willing t cme in and prvide supprt n shrt ntice, when there is a need fr special care r an emergency. PCA recipients shared the fllwing experiences as examples f pr quality PCA services. Several discussed cmmunicatin challenges and being unable t cmmunicate their needs and wants t PCAs wh d nt speak English as a first language. When recipients described services they received frm rganizatins they ften shared stries f rganizatins nt sending staff when they were needed and scheduled. Several discussed hw the high turnver f PCA wrkers negatively affects them. They described having t train peple ver and ver and hw tiring this is. PCA recipients shared stries f situatins in which PCA wrkers refused t cmplete certain wrk tasks that they needed t be accmplished and incnsistencies in what rganizatins allw and dn t allw their emplyees t d. Nearly all f the recipients indicated that the quality f services is directly related t the quality f the PCA and the lack f wages fr PCAs. PCA recipients discussed a wide variety f strategies emplyed t find, chse, keep and train their PCA wrkers. PCA recipients in the fcus grups described a wide variety f ways in which they find PCAs. Many used rganizatins t find their wrkers, while thers used wrd-f-muth. Sme had secret strategies that they were reluctant t share with the grup (i.e. recruitment strategies they fund t be effective but did nt want thers t knw fr fear that they wuld n lnger be effective). Sme used Craig s list, while thers used traditinal newspaper advertisements. Abslutely all f the recipients reprted difficulty in finding gd wrkers. Every single recipient indicated that the lw pay f wrkers made it difficult fr them t find and keep the gd wrkers n the jb and that turnver was directly related t lw wages. PCA recipients shared a wide variety f strategies and experiences with regard t hw their staff were riented and trained. Mst PCA recipients indicated that PCA wrkers came t them with very little experience r training. They als shared that individual PCA recipients r their family members/legal representatives needed t be invlved in training. Recipients wh were peple with disabilities were less likely t indicate that they wanted PCAs t cme t them with sme basic training. Family members ften reprted that they wished they did nt have t train PCA wrkers ver and ver again and wished the wrkers came with sme basic training. Several recipients indicated that specialists such as nurses, physical therapists, ccupatinal therapists r speech therapists needed t be invlved in training PCAs wh required these specialty interventins and prgram plans. Several recipients talked abut the lack f respect fr this prfessin and hw this cntributes t high burn ut and turn ver. Mst participants reprted the imprtance f verbal praise and daily recgnitin as a pwerful means t retain staff. Others did simple things like inviting the wrker t jin them fr a meal r buying small gifts n birthdays. The relatinship that evlves between the service recipient and the PCA wrker was described as an essential element f retentin. There were sme discrepancies between what family members did t retain staff and what peple with disabilities were able t d. Sme families reprted that they smetimes pay 20

24 vertime r retentin bnuses t their PCAs ut-f-pcket because they have fund this t be an effective strategy t keep gd wrkers. This was trublesme t many peple with disabilities in the fcus grups because they did nt have the financial means t prvide such incentives. PCA recipients expressed challenges assciated with having an apprpriate and adequate back-up plan in place t implement when their usual PCA is nt available. Recipients talked abut using prvider agencies as their back up plans, calling 911 r relying n family members r clse friends t assist them when their PCA did nt shw up r when they had an emergency. Recipients wh did nt have family members shared hw this lack f supprt resulted in them being mre vulnerable because they had t rely n agencies t ffer back up plans, and these agencies were ften incnsistent and unreliable. Many expressed they culd nt participate in PCA Chice because they were simply nt able t ensure their wn back up staff in case f emergencies. Bth service recipients and family members/legal representatives talked abut hw life stps when their PCAs fail t shw up fr wrk r when they quit. Parents shared hw they had lst jbs because they had t stay hme s much t care fr their child as a result f nt having a PCA, and recipients talked f having t be hspitalized because they had t have help and they had n PCA. Several recipients talked abut hw the lack f back up plans and security f service was directly related t lw wages, n vertime, n benefits, and lack f a career path. An example frm ne family member was that when their lved ne was sick and in the hspital, their PCA simply was nt paid. Mst cnsumers favred having family members as PCAs..dn t have gd back up plans r services and this is directly related t lw wages, n vertime, n benefits and a lack f a career path. There were far fewer cncerns expressed by PCA recipients abut using family members as PCAs than were expressed by PCA wrkers in their fcus grups. Mst f the recipients expressed the imprtant rle families play in the lives f their lved ne and indicated that as lng as the service recipient did nt bject t their family member wrking fr them, then it was fine. Sme suggested that prfessinal bundaries wuld need t be discussed and implemented. Examples were shared abut situatins in which cuples gt divrced s they culd prvide PCA services t their spuse and hw in sme prgrams parents are able t prvide PCA services fr their friend s child but nt their wn child. Many recipients advcated fr the use f family members (including parents) as PCAs as a means t reslve the shrtage f staff t hire. A few recipients expressed cncern that they had n family in the area and that they wuld never be able t rely n family t prvide their PCA services, s the system has t have ther alternatives t help them find and keep PCA wrkers. 21

25 PCA recipients expressed the need fr key changes in the areas f benefits, wages, training, supervisin and better matching f the PCA t the recipient, t imprve Minnesta s PCA prgram As with the PCA wrker participants, the PCA cnsumer participants were asked what ne thing they wuld recmmend r change t imprve PCA services in Minnesta. While many f the suggestins fr imprvement were directly related t recipients service needs and service delivery, interestingly, the mst significant change recipients suggested related t the wrking cnditins f their PCA wrkers. Like the wrkers, recipients f PCA services identified imprved wages and access t benefits as the number ne imprvement needed. They als wanted t see better supervisin, supprt, certificatin and imprved career ptins fr PCAs thrugh training. Other suggestins, related directly t the service recipient s needs and service delivery, included: nt requiring annual assessments fr peple wh have disabilities that d nt change year t year, differentiating mental health needs frm physical needs and prviding apprpriate training and PCA hurs based n these needs; cnsider creating a pl f PCAs s that matches between PCAs and PCA recipients can be made mre easily; making it pssible t have mre than ne PCA at a time based n need; and t allw fr cmmunicatin between ne PCA and anther that wrk fr the same persn. Finally, as slutins t the challenges these cnsumer participants had with ensuring safety thrugh back up plans, recipients suggested: imprving the prfessinalism expected and given t these wrkers, paying livable wages and gd benefits, ffering career ptins, retirement prgrams and paid time ff and prviding mre versight by prvider agencies and the State Department f Human Services. C. Other Interesting Findings Cnsumer Suggested Key Changes: Imprve the prfessinalism expected f PCAs. Pay livable wages and gd benefits. Offer career ptins, retirement, and paid time ff. Prvide mre versight fr the Department f Human Services. Prvide training based n needs f persn served. Create a pl f PCAs and match t cnsumer needs. There were several unexpected findings frm the fcus grups with bth PCA service recipients and PCA wrkers. All fcus grup participants seemed t enjy the pprtunity t share their stries and t prvide ne anther with ideas and suggestins fr hw t reslve, address r prevent issues and challenges they were facing. Participants ften exchanged cntact infrmatin and many expressed the desire t have pprtunities t cnnect and netwrk with ne anther. This type f netwrking and cnnecting and infrmatin exchanged seemed t be a means f quality mnitring and enhancing the prgram. Participants were wrking tgether t find mechanisms fr imprvement and accuntability. 22

26 V. Preliminary Recmmendatins and Opprtunities fr Actin The participants in the fcus grups were vcal and had much insight int the benefits and significant challenges f the current PCA prgram in Minnesta. Based n the key findings frm the fcus grups and the suggestins fr changes expressed by participants in bth the PCA Wrker and PCA Recipient Fcus Grups, we have develped preliminary recmmendatins t help strengthen and imprve the PCA prgram and pprtunities fr actin. These are summarized in the Exhibit belw. Imprve the quality and accessibility f the PCA wrkfrce, thrugh a cmprehensive evaluatin f wage levels and insurance ptins fr wrkers, and develping ptins fr imprvement. Lw wages and lack f affrdable benefits were clearly identified by bth recipients and PCA wrker in the fcus grups as critical prblems that cntributed t health and safety issues and the inability t get and keep gd wrkers. Peple wh wrked in and received all types f PCA services in Minnesta (e.g. PCA Chice, traditinal PCA services, managed care) identified wages and benefits as key prblems. Several fcus grup participants nted that PCAs were wrking substantially t many hurs in rder t earn a livable wage and that wrking s many hurs each day fr t many days in a rw puts the PCA at greater risk f making errrs and harming PCA recipients. Many PCA wrkers indicated that they wrked ther jbs. The direct care wrker/prvider survey which is currently being cnducted as part f this study shuld prvide greater insight int wage levels, ranges and variatins. As a result, we expect t have mre infrmatin t address these issues in the future. Other ptins t cnsider fr incentivizing PCA wrkers t cntinue in their field include: Develping wage incentives fr PCAs based n demnstrated cmpetence in the service needs f PCA recipients (e.g. cmpleting training in a well-designed certificatin r credentialing prgram addressing cmplex behaviral and health challenges such as the framewrk ffered by the Natinal Alliance fr Direct Supprt Prfessinals (NADSP) and Reimbursing PCAs fr a defined set f activities that are related t, but are nt, direct care service delivery (e.g., time spent in training, travel time in certain circumstances). In additin t addressing reimbursement levels, effrts shuld be made t imprve access t affrdable health insurance fr PCAs. Many wrkers are ging withut health insurance because premiums are t cstly and wages are t lw t enable them t purchase insurance premiums frm their paychecks. Effrts shuld be made t find mre affrdable health insurance by, fr example, creating access t affrdable pls fr PCA agencies r wrkers. Cntinue t maintain and strengthen PCA services as a Medical Assistance service ptin fr individuals with a variety f physical, intellectual/develpmental disabilities and mental health disabilities. It is clear that the participants in these fcus grups cnsidered PCA services as essential t the safety, health, well-being and enrichment f the lives f the thusands f persns wh need this 23

27 type f supprt in Minnesta. This service is delivered t and essential fr peple wh have physical disabilities, mental health disabilities, intellectual and develpmental disabilities, peple wh are elderly and peple with traumatic brain injury. Families are ften able t stay tgether and peple with disabilities can remain in their cmmunities and hmes because they are able t use PCA services. This service is keeping many peple ut f mre restrictive service settings and plays an abslutely critical rle in the lives f Minnestans with disabilities and their families. The State shuld make every effrt t maintain this service ptin fr peple wh need it. Develp a cmprehensive training prgram and prfessinal guidelines/ethical practice standards fr PCA wrkers. The lack f adequate, sufficient and right types f training was a majr cncern f the majrity f fcus grup participants. In mst situatins, PCAs felt unprepared and unqualified t prvide PCA services t the individuals they supprted. Mst PCA recipients, especially thse using a traditinal PCA service apprach, expressed strng and cnsistent pinins abut the lack f basic and specific training their PCAs had t prvide quality PCA services t meet their needs. PCAs need t be trained. They need t be affrded a set f prfessinal guidelines and ethical practice standards. There are cre cmpetencies that all PCAs need t have in rder t be effective at their jbs and ther skills that PCAs nly need if they are prviding services t smene wh requires that skill. Effrts shuld be made t create a statewide infrastructure fr a multi-tiered training and career develpment prgram fr PCAs. This training mdel shuld include basic, advanced, and specialized training cmpnents that are available t the wrkers in ways that are easily accessible and timely. Cmpletin f each tier culd be accmpanied with a wage incentive t supprt retentin and prfessinal develpment f PCAs in Minnesta. Develp and prvide a specific training curriculum fr PCA wrkers wh serve recipients with behaviral needs. PCAs are prviding services and supprts t individuals wh have significant needs in the area f interpersnal skill develpment, challenging behavir and cunseling. The PCA prgram is based n a medical mdel and has traditinally been ffered as a means t prvide supprt t peple wh need help with activities f daily living and instrumental activities f daily living. Over time, the PCA prgram has been used t supprt peple with greater mental health and cgnitive needs, and has prevented many peple with these needs frm living in mre expensive institutinal and cngregate care settings. Hwever, PCAs are nt trained t prvide adequate mental health and behaviral supprt services. They need this advanced level training. The Minnesta Department f Human Services shuld ensure that PCAs wh supprt peple with challenging behavir and mental health needs are adequately trained t d s. Ensure that adequate supervisin is prvided t all PCAs wrking in all types f PCA services in Minnesta. PCAs are wrkers. They need training, supprt and supervisin t be effective at their jbs. Bth wrkers and recipients wh participated in the fcus grups indicated that PCAs receive 24

28 little t n supervisin. Stries were shared by wrkers that illustrated that when supervisin des ccur it mst ften happens in the ffice r in a grup situatin where an rganizatin brings all PCAs tgether in a grup meeting and calls that supervisin. PCAs need ne-t-ne supervisin and need t be bserved ding their wrk n the jb where the wrk happens. Effrts need t be made t develp and ensure that adequate supervisin is prvided t PCAs in ways in which they get individual guidance, mentring, feedback, directin and supprt frm a supervisr n site. Strengthen and supprt family members as caregivers and develp mnitring prtcls t address unique challenges psed by this service mdel in the PCA prgram. While PCA wrkers expressed differing views abut allwing family members t be paid caregivers in Minnesta s PCA prgram, recipients verall favred this care delivery mdel. Hwever, the cncerns raised by wrkers, such as the ptential fr family members t take advantage f recipients and the need fr prfessinal bundaries expressed by family members, warrant clse mnitring f this mdel. In rder t address the unique challenges that family members as paid caregivers in Minnesta s PCA prgram present, DHS shuld develp and implement apprpriate mnitring prtcls that facilitate cnsumer chice in using this mdel, yet reduce ptential abuses and inapprpriate activities, hwever limited r rare, that this mdel may elicit. Supprt and training specifically fr families wh wrk as PCAs shuld als be prvided. This training shuld include ethical practice guidelines (such as the NADSP standards) and prvide training n hw t balance the dual rles f PCA prvider and family member. Natinal and nn-prfit rganizatins culd serve as resurces t develp a strnger mdel in Minnesta t supprt family members serving as PCAs: the Administratin n Aging s Natinal Family Caregiver Supprt Prgram is ne resurce. 3 Develp a systemic tl that will assist in facilitating recruitment f PCAs by recipients and help link PCAs t recipients. Many PCA recipients, as well as sme PCAs, experienced sme significant difficulties with matches made between PCAs and PCA Recipients. Als, service recipients wh used the PCA Chice mdel expressed difficulty finding qualified PCAs using traditinal recruiting strategies such as newspaper advertisements, psting n bulletin bards r web sites and referrals frm peple wh did nt knw them r their needs. Cnsideratin shuld be given t develping and maintaining a statewide systemic methd fr matching PCA wrkers t service recipients that can be used by PCA recipients (r their families), PCAs and rganizatins. 3 The Administratin n Aging s Natinal Family Caregiver Supprt Prgram established in 2000, prvides grants t States and Territries, based n their share f the ppulatin aged 70 and ver, t fund a range f supprts that assist family and infrmal caregivers t care fr their lved nes at hme fr as lng as pssible.. Resurces and studies abut varius states prgrams may prvide insight fr Minnesta t strengthen its prgram. 25

29 Exhibit 3. Summary f Preliminary Recmmendatins and Opprtunities fr Actin Findings Tpic PCA Recipient Fcus Grups PCA Wrker Fcus Grups Discussin Recmmendatins PCA prgram in general Family Members as PCAs Service recipients and family members/persnal representatives described a wide array f services and supprts prvided by the PCAs that are very similar t thse described by the PCAs themselves. PCA recipients cmmunicated the imprtant and active rle that PCAs play in helping them stay healthy and safe. Mst cnsumers favred having family members as PCAs PCAs expressed that they prvide a wide array f services and supprts t cnsumers, thus playing an imprtant rle in the lives f the recipients they serve. PCAs viced varied and pinins abut family members prviding PCA services t their lved ne PCA services are essential t the safety, health, well-being and enrichment f the lives f recipients. PCA prgram prvides essential services t peple with physical, mental health, intellectual, and develpmental disabilities, the elderly, peple with traumatic brain injury. PCA prgram allws families t stay tgether; persns with disabilities can remain in their cmmunities and hmes. The PCA prgram keeps many peple ut f mre restrictive service settings. Family members t wrk as PCAs fr their lved nes helps meets a service gap and prvides cnsumer chice. Family members as paid caregivers present unique challenges t the prgram. 1. Cntinue t maintain and strengthen PCA services as a Medical Assistance service ptin fr individuals with a variety f physical, intellectual, and develpmental disabilities. 1. Cntinue t allw family members t serve as PCAs. 2. Develp and implement strategies t address specific challenges psed by family members and paid caregivers. 3. Review natinal resurces fr ways t strengthen and supprt this prgram (e.g., NADSP Cde f Ethics). 26

30 Findings Tpic PCA Recipient Fcus Grups PCA Wrker Fcus Grups Discussin Recmmendatins PCA Wrking Cnditins (i.e., wages, benefits, hurs wrked, etc.) and Service Quality PCA Training, Supervisin and PCA/Recipient Supprt PCA recipient perspectives reflected similar challenges expressed by wrkers in with respect t the hurs wrked. PCA recipients had mixed experiences with the quality f PCA services which they receive. PCA recipients expressed challenges assciated with having an apprpriate and adequate back-up plan in place t implement when their usual PCA is nt available PCA recipients expressed mixed experiences regarding the traditinal PCA prgram ptin. PCA recipients favred the PCA Chice prgram in terms f level f cntrl and flexibility ver the activities the PCA perfrmed, but PCA wrkers expressed lack f benefits and lw r incnsistent wages acrss PCO rganizatins and prgrams as majr emplyment issues. PCA wrkers expressed the need fr key changes in the areas f affrdable health insurance, wages, and training, t imprve Minnesta s PCA prgram. PCA wrkers expressed challenges in wrk-live balance and wrking with clients with challenging behavirs. PCA wrkers described vastly differing experiences with regard t training, career develpment, Lw wages and lack f affrdable benefits were clearly identified by bth recipients and PCA wrker, and in all prgrams (e.g. PCA Chice, traditinal PCA services, managed care) as critical prblems that cntributed t health and safety issues, retentin f gd PCAs, and verall service quality. Lng wrking hurs in rder t make a livable wage puts the PCA at greater risk fr making errrs and harming PCA recipients. Pr wages and lack f access t health benefits affect quality and quantity f services delivered. The lack f adequate, sufficient and right types f training was a majr cncern f the majrity f fcus grup participants PCAs felt unprepared and unqualified t prvide PCA services t the individuals they supprted. Mst PCA recipients, especially thse using a 1. Cnduct a cmprehensive evaluatin f wage levels and insurance ptins fr wrkers, and develp ptins fr imprvement (e.g., the currently nging direct care wrker/prvider survey). 2. Develp affrdable health insurance ptins (e.g., access t affrdable pls fr PCA agencies r wrkers, r buy-in ptins under existing gvernment prgrams). 3. Develp wage incentives fr PCAs based n cmpletin f a well-designed certificatin r credentialing prgram fr PCAs (e.g. NADSP credentialing framewrk) which demnstrates cmpetence in the service needs f PCA recipients (e.g. cmplex behaviral and health challenges). 1. Develp a cmprehensive training curriculum t include: - Prfessinal guidelines/ethical practice standards fr PCA wrkers. - Cre cmpetencies that all PCAs need t have in rder t be effective at their jbs and ther skills that PCAs. - A specific curriculum fr 27

31 Findings Tpic PCA Recipient Fcus Grups expressed challenges with their emplyer respnsibilities, and lack f supprt. PCAs get little n site supervisin frm rganizatinal supervisrs. Service recipients are nt trained n hw t hire, train and supervise wrkers. PCA Wrker Fcus Grups Discussin Recmmendatins recgnitin and supervisin frm their emplyer. PCAs get little t n supervisin. When it des ccur it ften happens at the rganizatins ffice r in a grup situatin. PCAs want mre directin and guidance n hw t d their jbs. traditinal PCA service ptin, expressed strng and cnsistent pinins abut the lack f basic and specific training their PCAs had t prvide quality PCA services t meet their needs. PCAs are prviding services and supprts t individuals wh have significant needs in the area f interpersnal skill develpment, challenging behavir and cunseling. Over time, the PCA prgram in MN has been used t supprt mre peple with greater mental health and cgnitive needs. Hwever, PCAs are nt trained t prvide adequate mental health and behaviral supprt services. PCAs are wrkers. Wrkers need training, guidance, directin and supprt. This happens frm a designated supervisr and it was nt ccurring fr nearly all f the PCA wrkers in the fcus grups. PCAs wh service recipients with behaviral health needs. 2. Create a statewide infrastructure fr a multitiered training and career develpment prgram (basic, advanced, specialized curriculum) fr PCAs by wrking thrugh the Minnesta State Clleges and Universities (MNSCU) and ther educatinal institutins and private sectr businesses/prviders. Prvide a wage incentive by tier t supprt retentin and prfessinal develpment f PCAs in Minnesta. 3. Ensure that all PCAs wh wrk in all types f PCA services in Minnesta receive adequate supervisin n site. 4. Ensure that service recipients wh self-direct receive training n hw t be an effective supervisr. 28

32 Findings Tpic PCA recruitment PCA Recipient Fcus Grups PCA recipients discussed a wide variety f strategies emplyed t find, chse, keep and train their PCA wrkers PCA Wrker Fcus Grups Discussin PCA recipients and PCAs, experienced difficulties with finding the right PCA wrkerrecipient match. Recipients in the PCA Chice ptin expressed difficulty finding qualified PCAs using traditinal recruiting strategies such as newspaper advertisements, psting n bulletin bards r web sites and referrals frm peple wh did nt knw them r their needs. Recmmendatins 1. Develping and maintain a statewide methd that can be used by PCA recipients (r their families), PCAs and rganizatins t find effective and apprpriate PCAs and match them t peple wh are trying t find a PCA. 29

33 Appendix A Fcus Grups

34 Appendix A List f PCA Cnsumer and Wrker Fcus Grup Fcus Grup Type Lcatin Date Participants Cnsumer Blmingtn Cnsumer Mankat A Cnsumer Rseville Cnsumer Duluth Cnsumer Minneaplis Cnsumer Bemidji A - Native American Cnsumer Bemidji B - Open Cnsumer Mankat B SubTtal 55 Wrker Brainerd A Wrker St. Paul Wrker Minneaplis Wrker Brainerd B Wrker Bemidji Native American Wrker Mankat SubTtal 25 Ttal Fcus Grups 14 8 Lcatins Ttal 80 A

35 Appendix B Sample Fcus Grup Flyers

36 Minnesta PCA Services Fcus Grup fr Wrkers Brainerd Tuesday February 24, :30-5:00PM The purpse f this study is t learn mre abut hw well persnal care assistant services helps (r des nt help) peple with disabilities (and their families) functin in their daily lives and activities. We want t learn hw peple with disabilities (r their families) use persnal care assistant services. Lcatin: Lutheran Scial Services Training Rm 716 E. Street Brainerd, MN LSS is lcated in the East Brainerd Mall Fr further infrmatin please cntact Jhn Sauer at: sauer006@umn.edu, W: , C:

37 PCA Services Cnsumer and Wrker Fcus Grups t be held in January 09 The Minnesta Cnsrtium fr Citizens with Disabilities (MN-CCD) is wrking with the University f Minnesta, Cllege f Educatin and Human Develpment, t identify rganizatins that can help the University f Minnesta find participants fr a series f fcus grups n the tpic f Minnesta's Persnal Care Assistant (PCA) Prgram. The results f these sessins will be used t make recmmendatins that will imprve the PCA Prgrams in Minnesta. The U f MN is requesting yur rganizatin s assistance in helping t identify PCA cnsumers t participate in these fcus grups. Fcus Grup Participants: Shuld receive persnal care assistant (PCA) supprts OR shuld be emplyed as a persnal care assistant either thrugh Minnesta's Medicaid State Plan Services r thrugh Minnesta Hme and Cmmunity Based Waiver Services. Will be in a fcus grup with abut 7 10 ther peple and the fcus grup will last abut 1.5 hurs. Will answer questins abut hw they use r prvide persnal care attendant services. Will be given a $30 gift card fr their participatin in the fcus grup, and if requested transprtatin csts necessary fr participatin will be reimbursed. Will be assured accmmdatins (translatr, ASL interpreter, etc ) if necessary fr participatin. Fcus Grups: Will be held in six lcatins thrughut MN during the mnth f January. The six sites will be: Rseville, Bemidji, Mankat, Blmingtn, Duluth and Minneaplis. Will last apprximately 90 minutes. Detailed infrmatin regarding specific dates and lcatins will be prvided t thse wh express interest in participatin. If yu are interested in wrking with the U f MN staff n this prject, please cntact Jhn Sauer at: r him at sauer006@umn.edu. Yu may als leave a message fr him t return yur call at , ext Thank yu fr yur cnsideratin f assisting the U f MN staff in identifying participants fr this imprtant study.

38 Minnesta PCA Services Fcus Grup fr Cnsumers Tri-Reservatin (Red Lake, White Earth, Leech Lake) Wednesday March 4, :30-5:00PM The purpse f this study is t learn mre abut hw well persnal care assistant services helps (r des nt help) peple with disabilities (and their families) functin in their daily lives and activities. We want t learn hw peple with disabilities (r their families) use persnal care assistant services. Lcatin: Hamptn Inn and Suites 1019 Paul Bunyan Drive S. Bemidji, MN Rm 322 Fr mre infrmatin n directins, please cntact the Hamptn Inn at: Fr further infrmatin please cntact Jhn Sauer at: sauer006@umn.edu, W: , C: