Understanding the Health and Employment Experiences of MassHealth/CommonHealth

Members with Disabilities: A Focus Group Study

Alexis Henry, Leslie Olin, Christine Stein, CHPRRaymond Glazier, Abt Associates

April 2006

Focus Group GoalsTo understand the perspectives of MassHealth /CommonHealth members with disabilities regarding the following: disability experience; employment experiences; barriers and facilitators to employment, ways to overcome barriers and enhance facilitators; the relationship of MassHealth services to employment efforts.

Target Population

• MassHealth Members – MassHealth/CommonHealth – MassHealth Standard Disabled

• Working and Non-Working Adults • Ages 18 to 64 • Speak English• Ability to travel

Methods• Disability groups

– Physical or mobility disabilities(amputation, back injury, arthritis, SCI)

– Psychiatric/Cognitive disabilities (depression, mania/bipolar disorder, psychosis, schizophrenia)

• Recruitment letters sent to MassHealth members with telephone follow-up (incorrect/old address information)

– Recruitment posters displayed at Clubhouses and ILCs– Participants may be a better informed group

• Facilitated and co-facilitated by A. Henry, C. Stein• Audio taped with field notes by L. Olin

• 7 members per group on average

Methods (continued)

• Groups lasted between 1.5 to 3 hours• Stipend of $45 for participation and travel• Professional transcription of audiotapes• Dates and Locations:

– 09/2003 Genesis Club, Worcester– 10/2003 Center Club, Boston – 12/2003 Metro West ILC, Framingham– 08/2005 Boston ILC

• Data Collection– Screening Form, Consent Form, Registration Form– Transcript analyzed using NVivo 2 qualitative analysis

software

Guiding Questions• What are the things that most prevent people with disabilities from getting and

keeping jobs?• Are people with disabilities able to work as much as they want? If no, why not?

What prevents people from working as much as they want?• What are the things that most help people with disabilities get and keep jobs?• What needs to be done so that people with disabilities can work as much as

they want?• How easy is for people with disabilities to get MassHealth/CommonHealth

benefits?• How easy is it for people to understand their health insurance coverage/benefits

through MassHealth/CommonHealth?• Are there ways that MassHealth/CommonHealth benefits help people work? If

so, how?• What could be done to improve MassHealth/CommonHealth benefits and

services so that people can work as much as they want? • How easy is it for people with disabilities to get information about state or federal

government laws, programs and services that might help them with employment? How easy is it to understand these laws, programs and services?

• What needs to be done to improve access to information about laws, programs and services?

Participant Characteristics

• 29 Total Participants (5 No-Show, 1 Cancellation)

• Average age of 29 • Gender:18 Female / 11 Male

Marital Status 20 Single 4 Married 3 Separated/Divorced 2 No answer

Race 18 White 3 Black/African 2 American Indian/

Alaskan Native American) 2 Hispanic

Primary Causes of Disability (screening) Not mutually exclusive

• 13 participants with Physical Health (PH) conditions– Mobility, Musculoskeletal, Orthopedic

• 16 participants with Mental Health (MH) conditions – Major Depression, Bipolar disorder, Schizophrenia

Participant Characteristics

Employment Characteristics

Job Types Reported• Cashier / Customer Support• Cleaner / Janitor• Director of Volunteer Services• Disability Consultant• Driver• Mail Courier

• Office Assistant• Receptionist• Research Assistant• Research Coordinator• Secretary• Teacher• Volunteer

18 people were employed or recently employed

10 people were not employed (1 missing data)

Occupations Reported

• Managerial, Professional • Technical, Sales, Administrative Support• Service Industry • Operator, Fabricator, Laborer

Employment Characteristics

Where People Worked

• Private company/business with fewer than 500 employees

• Government Agency or Military

Overview of Findings

• Issue Raised by Participants– Especially Valued MassHealth Services– Perceived MassHealth Coverage Deficiencies– MassHealth Administrative Issues and Problems– Disability Management and Employment Issues– Factors Facilitating Employment Success

• Key concerns of MH vs. PH participants, and common concerns are noted

Summary of Findings

• Especially valued MassHealth services– MH: Psychopharmacology Benefit

– PH: PCA Services, Durable Medical Equipment

– Common: pharmacy benefit; doctor visits; outpatient care; inpatient care; transportation to medical appointments.

“I am grateful for it [MassHealth] because I couldn’t afford it if I were to go on private insurance it would be a $1,000 a month minimum. I don’t know how much it would cost but I couldn’t afford it so I am grateful for it.”

Summary of Findings• Perceived MassHealth Coverage Deficiencies

– MH: Limited formulary, one-in-two-weeks psychotherapy limit, restrictive psychiatric inpatient stays

– PH: Limits on DME & DME repairs, insufficient PCA hours, restricted rehabilitation facility inpatient stays

– Common: No coverage for dental services; eyeglasses; preventative care; podiatry; alternative medicine

“MassHealth will pay for a $20k wheelchair and not a $1600 scooter, even if the primary care physician approves it.”

“MassHealth will not pay for the bed recommended by my primary care physician (spinal cord injury).”

Summary of Findings• MassHealth Administrative Issues and Problems

– MH: Prior authorization for drugs, easier to access services as an inpatient

– PH: Prior authorization for DME and repairs to same– Common: Unclear/inconsistent information; one

outpatient visit per day limit; poor coordination and continuity of care; co-payments; untimely transportation authorizations; CommonHealth cost-sharing measures

“I couldn’t get there [specialist] because the transportation hasn’t been approved. I had to wait three months before I could get another appointment and of course all that time my condition deteriorated.”

“We are happy with what we got but some of this stuff is just so frustrating. Day in and day out.”

Summary of Findings• Disability Management & Employment Issues

– MH: Stigma, co-worker discomfort, limited tolerance of criticism, stress levels, need for part-time work, need for flex time as accommodation

– PH: Stigma, scapegoating by co-workers, poor body image, limited energy, workplace accommodation needs

– Common: Limited time and energy; unattractive benefits and wages tradeoff; poor information on Social Security Work Incentives; lack of skills and training; limited job history; employers’ low productivity expectations; over-qualification

“People with disabilities want to work, they are eager to work they show up at the job, they may not show up on time due to transportation issue or PCA issues.”

Summary of Findings

• Factors Facilitating Employment Success– MH: Clubhouse experience, VR skills training, VR

aptitude and preference assessments, job coach services

– PH: Independent Living Center experience, IL support services, VR start-up services, VR vehicle modification

– Common: Peer counseling; mentoring; access to MH services; volunteer work experience; PASS plans; VR retraining; other VR services

“I call Vocational Rehab; they are a good source for information, and the Internet.”

Conclusion

• Disability impacts all parts of life– “I’m on disability…emotionally, physically, economically”

• People with disabilities in MassHealth want to work– “If you’re not working, you’re not contributing”

• MassHealth members are grateful for the services that are covered, but also find managing the health and healthcare services frustrating and burdensome

– “We are happy with what we got but some of this stuff is just so frustrating. Day in and day out…it wears you down.”

• For people with disabilities, the demands of managing personal health mean that working can be a significant challenge

Focus Groups conducted under the Massachusetts Medicaid Infrastructure and Comprehensive Employment Opportunities Grant (CFDA # 93.768), funded by the Centers for Medicare and Medicaid Services.