The document presents a qualitative case study on the implementation of health as a human right in Lewis & Clark County, Montana, highlighting significant barriers such as lack of insurance, high costs, and inadequate healthcare services. It emphasizes the need for accountability, transparency, and non-discrimination in health care access, along with recommendations for improving services and financing options. The findings reflect a community divided on the perception of health care as a human right, with varying opinions based on demographic factors and income levels.

1. Implementing a Human Right to Health: a Qualitative Case Study Lewis & Clark County, Montana Purvi Pinakin Patel Candidate for JD/MPH Preceptor: Anja Rudiger, Ph.D National Economic & Social Rights Initiative (NESRI) New York, NY

2. Lewis & Clark County, Montana County Seat: Helena Year Organized: 1864 Square Miles: 3,461 Lincoln HELENA Augusta Canyon Creek

3. County Health Profile Population: 60,925 21% lack health insurance 12% of adults unable to visit a doctor due to cost 29% live below 200% of the federal poverty level (FPL) 7% are on Medicaid 54% of Community Health Center clients were uninsured in 2004

4. December 2008 Resolution: Health Care as a Human Right

5. Needs Assessment Partners National Economic & Social Rights Initiative (NESRI) New York, NY Anja Rudiger, Ph.D Dir, Human Right to Health Program Expertise: Training & technical assistance Research, analysis and documentation Montana Human Rights Network (MHRN) Helena, MT Kim Abbott, Project Liason Expertise monitoring and reporting on the activities of the radical right-wing groups in Montana organizing local human rights groups & policy initiatives

6. Using a Human Rights Framework Universality: Must be afforded to everyone, without exception. Indivisibility: Are indivisible and interdependent Participation : People have a right to participate in how decisions are made regarding protection of their rights. Accountability: Governments must create mechanisms of accountability for the enforcement of rights. Transparency: Governments must be open about all decision making processes related to rights. Non-Discrimination : Human rights must be guaranteed without discrimination of any kind.

7. Methodology Initial Targets: 10 focus groups, 1-2 hours ea. 5-10 participants/group Sampling framework (by geography & demographics) Discussion protocol (past experiences, human rights framework)

8. Participants Group Date # Participants Helena - Task Force 8/17/09 3 Helena - YWCA 8/17/09 7 Canyon Creek 8/19/09 2 Lincoln 1 8/20/09 2 Augusta 8/25/09 13 Helena - FoodShare 10/13/09 10 Lincoln 2 10/14/09 3 Helena 4 11/5/09 7 TOTAL 47 AGES # percentage 18-24 years 2 5% 25-34 years 5 12% 35-44 years 0 0% 45-54 years 11 26% 55-64 years 13 31% 65+ years 11 26%

9. Participant Demographics Education Level Income Education Level number percentage no HS Diploma 2 5% HS/GED 14 34% Associate's 4 10% Bachelor's 13 32% Graduate 8 20% Income number percentage < $20,000 16 41% $20,000 - $49,999 11 28% $50,000 - $100,000 9 23% $100K+ 3 8% Health Insurance Status number percentage Uninsured 11 24% Employer-based 17 37% Gov-sponsored 14 30% Individual 6 13% Other (e.g. VA, parents) 5 11%

10. Health as a Human Right Access: Cost & Financing: Affordability - based on ability to pay Equity - resources allocated and used according to needs and health risks Comprehensiveness - all screening, treatments, therapies and drugs needed to preserve & restore health Availability of Services: Adequate health care infrastructure (e.g. facilities, trained professionals) Adequate services (e.g. primary care, mental health) Transportation Quality of Care: medically appropriate timely, safe, and patient-centered Acceptability and Dignity in Treatment: culturally appropriate (gender, age, culture, language, etc.) protect confidentiality

11. Key Findings : Access: Cost & Financing Affordability of insurance coverage Employer-sponsored insurance plans can have such high deductibles or co-pays  virtually impossible for patients use services. Patients forgo routine, preventative care  health care services only for emergencies. Even premiums for cheaper private insurance seem too expensive Access to needed services for high-risk patients with pre-existing conditions may not be affordable because of the increase in cost of insurance. Expenses for Service In some cases, residents will remain uninsured and pay out-of-pocket for care, only seeking care for what they can afford. This may mean paying for a diagnosis but treating with over-the-counter medications or self-care at home Lack of alternative financing options for low-income patients (i.e. sliding scale fees or payment plans). Participants knew others who: Would not take medications because they could not afford to pay for them Felt it would be financially better for their spouses if they died rather than seek treatment that could lead to financial burden. Legal concerns having to go to court to get bills paid Being concerned about financial consequences about not answering bill collectors “ We’re Medicare, and it’s wonderful. It’s wonderful. I mean I wish everybody in the country had it.” -- 2 nd Lincoln Focus Group

12. Key Findings : Availability of Health Care Shortage: Family doctors/primary care Specialists (coverage/out-of-network) Ambulance/emergency services Geographic Isolation/Transportation Concerns about Navigability of the Health System “ Some of the doctors, that are listed in the yellow pages, they’re full…the people that people have been referring me to, they’re full so they won’t take any more. And I stopped looking, but I’ve had that happen a few times.” -- YWCA Focus Group

13. Key Findings : Quality of Care Positive feedback Excellent WIC Lincoln clinic great Foodshare program Voluntary ambulance (Lincoln & Augusta) Negative feedback Hospital Long waiting times in the ER, expensive care, poor quality Bad testing for serious symptoms, poor diagnosis Respondents feel providers care more about payment than patients Communication between providers “ He gave me a couple of pills, and said I could take one or two of them, and said, ‘Alright, I’ll have the nurse get you a walker so that you can get home alright.’ I have steps going up to my house, and my bathroom was upstairs, I live alone, and I told him this. And he said, you know, ‘I’d really like to admit you but I can’t.’” Taskforce Focus Group

14. Key Findings : Acceptability & Dignity “ I went in Wednesday, pulled a tooth that was abscessed. I told them I needed antibiotics, and they said no. I went back Friday as my face was even more swollen than it is now. He kind of laughed and said, “Well, I guess we should have started those antibiotics anyhow.” Then reminded me that I was getting the care for free.… broke one tooth, pulling one out, and I was reminded twice that I was getting the service for free.” YWCA Focus Group Respondents, particularly low income participants, expressed concern about being treated with respect by health providers. Participants related stories they knew, people would not take medications because they could not afford to pay for them feel it would be financially better for their spouses if they died rather than seek treatment that could lead to financial burden. Poor or inadequate information about mental health disorders can be taken for deviant behavior and criminalized. This can lead to further stigmatization, and even criminalization, of a patient.

15. Is Health/Healthcare a Human Right? The majority of participants considered health care as a human right (60%) More rural residence often felt that health care came with a degree of independent responsibility Medicaid and Medicare participants generally agreed that health care was a human right. People who considered themselves middle class but whose incomes put them in the lower-income brackets tended to display resentment of those receiving “free” health care, and did not consider health to be a human right. Several others emphasized ethical obligations to meet health care needs, but did not feel comfortable using the term “human right.” To have a healthy community, Government OR community members needed to help everybody to be healthy “ I think it should be a right but it comes with responsibilities.” (Lincoln 2) “ I consider it to be out ethical responsibility to supply it to everybody, but I don’t see it as a human right.” (Helena 4)

16. Recommendations Expand health services, particularly primary care Improve care-coordination Improve navigability of health services increase transportation options (ex: buses for the elderly) Expand hours or reserve some business hours for off-peak times Expand financing options (uniform pricing, flexible financing, etc.)

17. Limitations Sampling framework Actually recruiting groups as per framework Uniformity in group sizes Lack of participants between 35-44 years-old Concern with moderation by newly trained task force members outside of NESRI Distinguishing prejudice from personal frustrations and resentment over healthcare “ The group we did last week… it’s not a reflection of the entire community, but it’s a reflection of some parts of the community …” -- Researcher, about the Lincoln group

18. Anja Rudiger NESRI Victoria Grant NESRI Kim Abbott Montana Human Rights Network Martha Davis Northeastern University School of Law Marcia Boumil Tufts University School of Medicine, Dept. of Public Health & Professional Degrees Pat Hennessey, Billie Miller, and Bob Putsch Lewis & Clark County Task Force on Universal Access to Healthcare Acknowledgements