NEBRASKA TICKET TO WORK PALLIATIVE CARE PROGRAM

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1 NEBRASKA TICKET TO WORK PALLIATIVE CARE PROGRAM Project Report August 2008 In 2006, the Nebraska Hospice and Palliative Care Partnership (NHPCP) and the Nebraska Department of Health and Human Services partnered to develop and implement the Ticket to Work Palliative Care Program. The demonstration project was designed to give Nebraskans access to experts to help keep pain and symptom issues from getting in the way of holding a job. Prospective program clients received an initial assement from teams that included a social worker and a nurse from a local palliative care program. The palliative care program provided medical interventions and comprehensive referrals to community services. The program did not, however, provide direct job placement services. Instead, it incorporated referrals to a variety of existing agencies to support individuals with disabilities who desired to work. NHPCP contracted with the team at Saint Elizabeth Palliative Care in Lincoln to see the first client in December Jan Tooker, MSW, was hired by NHPCP in May 2007 to coordinate the Ticket to Work Palliative Care Program. In February 2008, the program expanded to include four counties in northeast Nebraska through Siouxland Palliative Care. The program is expected to expand to western Nebraska in late The Ticket to Work Palliative Care Program is funded by a federal grant awarded to the Nebraska Department of Health and Human Services from the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. NHPCP, a nonprofit 501(c)3 organization, is the state s hospice and palliative care association. WHAT IS PALLIATIVE CARE? Palliative care means comfort care (vs. curative care). It focuses not only on pain and symptom management, but also on social, psychological and spiritual issues that can impact both an individual s physical condition and the effectiveness of medical interventions. Although palliative care grew from the hospice movement, there are distinctions between the two. Palliative care is not limited to those with a terminal illness; it is available at any point that symptoms present themselves. GRANT FUNDING NHPCP received the following amounts to administer the program: 2006 $50, $71, $71,000 CORE TEAM Client Social Worker Nurse Pharmacist Physician Multiple Community Resources The Need "Congress calculated that if only an additional one-half of one percent of the current Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) beneficiaries were to cease receiving benefits as a result of employment, the savings to the Social Security Trust Fund and the U.S. Treasury would exceed 3.5 billion dollars over the work life of such individuals. Thomas J. Bliley, Committee on Commerce, U.S. House of Representatives Report , Part 1, Work Incentives Improvement Act of 1999, July 1, 1999, p. 2.

2 By working with clients to address their pain and symptom issues, the Ticket to Work Palliative Care Program aimed to prevent them from entering the public funding system, or gave them the support necessary to one day no longer receive SSDI benefits. PARTICIPANT GUIDELINES In addition, the coordination of healthcare and pain management increased employment outcomes and decreased expenditures through traditional health financing programs such as Medicaid, Medicare, Worker s Compensation and private insurance providers. For example, one client drastically decreased the amount of hospital stays upon completion of the Ticket to Work Palliative Care Program, therefore decreasing healthcare costs. I received a pain cream which helps me much more than a pill. PROJECT GOALS Increase the number of healthcare professionals who assist their clients with chronic pain, to allow those clients to return to the workforce Create new opportunities for Nebraskans with chronic pain to return to the workforce Provide new medical and non-medical interventions to address pain and symptoms barriers to employment Because pain and symptom issues can be difficult to manage, the program conveyed that it sought but did not guarantee that participants pain and symptom issues would be controlled enough to allow them to seek work, or that a job would be available even if their issues improved. REFERRAL SOURCE # OF REFERRALS Vocational Rehabilitation 15 Newspaper ad 9 Newspaper article 5 Physician 3 Friend and Family 3 Other Agencies 2 Total 37 OUTREACH NHPCP was responsible for generating referral activity. NHPCP placed ads in seven Nebraska newspapers from December 2007 through May 2008; worked with the Nebraska Department of Health and Human Services to distribute numerous news releases; and distributed program brochures to area physicians. The program received confirmed media coverage at least 22 times between June 2007 and July 2008, including the American Public Human Services Association s newsletter, the American Pain Foundation s Pain Monitor, the National Consortium of Health Systems Development s e-newsletter, continuous coverage on disabilityinfo.gov, the Nebraska Hospital Association s Healthier Nebraska magazine, and KHAS-TV (Hastings, Neb.). Post-it notes, magnets and posters were produced and distributed. The website address of nepalliativecare.org was purchased for use in promoting the program. NHPCP worked with numerous organizations, including Vocational Rehabilitation, the Nebraska Medical Association, Physical Therapy Association, Social Workers Association, Hospital Association, Pharmacists Association, Chiropractic Physicians Association, Health Care Association and Nurses Association to get information out to prospective referral sources through their newsletters and websites, and by presenting and providing tote stuffers at their events.

3 PARTICIPANT GUIDELINES Persons aged who were unable to work due to chronic pain or symptom issues were appropriate for participation. Participants must have wanted to return to work and been able to meet with the palliative care team in their area. There were no earnings/income requirements. Those with an alcohol or drug dependency were excluded until the addiction was treated. There was no cost to participants for consultation with project staff. Other medical care received or recommended was submitted by the participant to insurance, Medicaid, Medicare or other funding sources for payment. I was ready to give up. (The palliative care team) let me know I could fight back from this and be a useful member of society. Forty-five percent of the program participants were Social Security Disability Insurance recipients upon admission; none were receiving Supplemental Security Income. If participants were receiving SSDI/SSI or were potentially eligible for state or federal disability benefits, they were offered the opportunity to: Understand the impact of earned income on disability related benefits Develop a plan to safely navigate into or maintain employment while protecting essential medical, cash, and service related benefits, and Use state and federal employment supports or SSA work incentives. Individuals in the process of appealing a denial of SSDI benefits were not eligible to participate in the Ticket to Work Palliative Care Program. ASSESSMENT DATES NUMBER Total 37 NUMBER PERCENTAGE Closed cases % Current cases % Total Admitted % Program Challenges and Findings The palliative care teams found that alternative therapies, such as massage therapy, acupuncture and water therapy, were often beneficial to participants but a lack of funding for such therapies by many clients restricted their access to them. A higher proportion of staff time was needed for clients psychosocial issues than was originally expected by the program s organizers. Because client data arrived from a variety of sources, information management was a challenge. This included merging information from the individual palliative care programs data management systems into that of NHPCP, so the data could be extracted and analyzed.

4 It was necessary to blend the models of care for the social service and medical provider fields. This proved especially challenging with regard to the sharing of health information among organizations, so as to follow HIPAA guidelines. At the Lincoln program site, the number of clients served was restricted by budgetary constraints; the number of client referrals was greater than the number of budgeted slots. Participants financial situations were found to be a significant stressor, often contributing to the physical well being of the participant. TOTAL EMPLOYMENT RATE Total # of closed cases 32 # Not working before admission 27 # Working before admission 5 # Working after closing 12 Percentage of all cases working after closing 37.5% # Not working before admission, and working after closing 8 Percentage of those not working before who are working after closing 29.6% Primary Limitation RE-EMPLOYMENT RATE BY PRIMARY LIMITATION # of participants with this limitation # of participants with this limitation who weren t working before admission # of participants with this limitation working after close, who weren t working before admission Re-employment rate Back pain % Fatigue/weakness % Generalized pain % Leg/foot pain % Lifting/bending limits % Mental health diagnosis % Neck pain % Seizures % Other % Total % SUSTAINABILITY In the summer of 2008, NHPCP began developing a business dedicated to administering the goals of the Ticket to Work Palliative Care Program. The data collected from the grant-funded pilot program will allow NHPCP to successfully expand and sustain the program, and make a significant long-term impact to lessen the use of disability insurance and public monies as a source of Nebraskans income. The business, proposed to be named Palliative Care and Pain Management Services, will be funded by private businesses, such as worker s compensation insurance companies. Investigation continues regarding the future use of public funding for the program on an ongoing basis.

5 Case Studies JOY Joy, 34, entered the Ticket to Work Palliative Care Program with fibromyalgia, porphyria, osteoporosis, migraines and back injury. She shared that she was addicted to hospital stays she was hospitalized 17 out of 28 days during the month prior to her admission and morphine. Upon admission, Joy used phrases such as I will never be normal, high stress, physical pain bad enough you want to die, living in a little box, life being over at age 22, feeling depressed, addictive tendencies, and I have worries about my finances. She stated that she had strained relationships with her parents and sister, and had alienated her friends and become very isolated. She received SSDI and was on Medicare and Medicaid. The palliative care team assessed and revised Joy s medications; recommended alternative therapies including water exercises, positive self-talk and self-discipline; and connected Joy with community resources including a licensed mental health practitioner, Vocational Rehabilitation, Easter Seals, a health food store with a discounted purchasing plan, and volunteer work. At follow-up, Joy had gone 10 months without an overnight hospitalization, and was planning a party for her first year anniversary of being hospital-free. On a scale of 1 to 10, with 10 being unbearable, Joy rated her lower chest pain at a 10 upon program admission, and at a 5 after completing the program. On a scale of 1 to 10, with 10 being excellent, she rated her quality of life before admission at a 5.5 and at a 9 after program completion. She stated, I am feeling much better about myself. I am putting on make-up every day and doing my hair and putting on outfits. Within six months of being dismissed from the program she had secured a part-time job and was pleased that her employer was willing to have a physical therapist I feel much better about myself. I am putting on makeup every day and doing my hair and putting on outfits. This program is like a support group. I wasn t alone. Someone understood. assist in evaluating her workspace for appropriate reasonable accommodations so that she could be successful there. Joy was looking forward to having money coming in with which she can pay for alternative therapies to further decrease her pain. She developed new friendships, improved relationships with her parents and sister, and began interacting socially with others. DOUG Doug, 49, suffered with bilateral pain to both elbows caused by moving a pool table at work six years prior to admission. He had three failed surgeries two on the right elbow and one on the left. The pain radiated down his arms with sensations that felt like razor blades cutting. Doug s physician suggested he visit a pain clinic but Doug felt that he couldn t financially afford to do so. Upon admission to the Ticket to Work Palliative Care Program, Doug was seeing a psychologist for depression, and spoke positively about the counseling. Doug described his sleep as "terrible", although he had no trouble getting to sleep. He reported that he would sleep three hours initially, would awake for one hour, then would go back to sleep in pieces after that. Doug shared concern about how well he would be rested if he were to obtain a job. Doug said that his long term and short term memory was shot but did not feel this was due to his pain. Upon admission, Doug and his wife were pursuing marriage counseling through her employee

6 assistance program. Doug was able to feed himself but couldn t bear any weight with either arm. The pain had limited family activities and he had distanced himself from his religion, although he expressed he believed in a spiritual being. Doug was motivated to work. He wanted to find a job that allowed him to work a full eight hours without suffering pain. Doug was realistic that the pain would never go away completely but wanted to try anything to get the pain under control and obtain employment. The palliative care team made suggestions regarding his medications, Doug was fitted with floating armrests, and relaxation and sleep techniques were recommended. At follow-up, Doug held a full-time job. He was walking his dog 30 to 45 minutes daily. He was trying to laugh daily, reported that his marriage had improved and affirmed that his spirits were better. On a scale of 1 to 10, with 10 being excellent, Doug ranked his quality of life at 5.5 before admission to the Ticket to Work Palliative Care Program and at 8 upon completion. PROGRAM PARTNERS Nebraska Hospice and Palliative Care Partnership Jan Tooker, Ticket to Work Program Coordinator Jennifer Eurek Tracy Rathe Patricia Snyder Saint Elizabeth Palliative Care Vicki Coffin Lyndell Cummings Barbara Rooney LaDonna VanEngen Becky Walkowiak Hospice of Siouxland Palliative Care Kelly Dailey Cheryl Harrington Jeanne Johnson Tammy Thomas-Mahaney Linda Todd Nebraska Department of Health and Human Services Sharon J. Johnson Joni Thomas

7 ADVISORY COUNCIL Janelle Brock, VA Nebraska-Western Iowa Health Care System Vicki Coffin, Saint Elizabeth Palliative Care Lyndell Cummings, National Pharmacy Specialties Catherine Eberle, Nebraska Medical Center Phillip E. Essay, Nebraska Pain Consultants Mary Gordon, Nebraska Department of Health and Human Services Kathy Hoell, Nebraska Statewide Independent Living Council Margaret Hoffman, Vocational Rehabilitation Sharon J. Johnson, Nebraska Department of Health and Human Services Marjorie Jones, Saint Francis Medical Center Susan Lewis, Social Security Administration Al Martinez, Disabled American Veterans Denise McNitt, Alegent Health Karen Mosier, Nebraska Department of Labor Susan Peters, Memorial Health Center Hospice, Sidney Katie Rader, Social Security Administration Diane Randolph, Methodist Home Health and Hospice, Omaha Barbara Rooney, Saint Elizabeth Palliative Care Susan Miller Schoen, Nebraska Advocacy Services Mark Schultz, Assistive Technology Partnership Patricia Snyder, Nebraska Hospice and Palliative Care Partnership Joni Thomas, Nebraska Department of Health and Human Services Linda Todd, Siouxland Palliative Care, Sioux City, Iowa LaDonna VanEngen, Saint Elizabeth Palliative Care Rebecca Walkowiak, Saint Elizabeth Palliative Care Theresa Wood, Saint Francis Medical Center Jan Tooker, NE Hospice and Palliative Care Partnership, Ticket to Work Program Coordinator

8 3900 N.W. 12th Street, Suite100 Lincoln, NE Phone/ Fax 402/ nepalliativecare.org