The ACA and Its Impact on Persons with Disabilities:

1. NASHP Conference October 4, 2011 Kansas City, MO The ACA and Its Impact on Persons with Disabilities: Implications of the Kansas Demonstration to Maintain Independence and Employment Jean P. Hall, PhD University of Kansas jhall@ku.edu

2. The Demonstration to Maintain Independence & Employment (DMIE) Jean P. Hall Funded by CMS through the Ticket legislation in four states to answer the question: Can a program of medical assistance and other supports prevent or forestall loss of employment and independence due to a potentially disabling physical or mental impairment? In Kansas, the DMIE targeted 500 participants in the state high-risk pool; risk pool enrollees have historically transitioned to SSDI at a rate 8 times that of the general population. Longitudinal study with intervention and control groups.

3. Current State High-Risk Pools Jean P. Hall Approximately 200,000 people are enrolled in 35 state high risk pools nationally; individuals are uninsurable in the private market due to pre-existing conditions Steep premiums that increase with age; range from 125 to 200% of individual market rates for the state High levels of deductibles and co-insurance; similar to other individual policies Limits on some benefits, such as preventive services, prescriptions, and mental health; in Kansas, no coverage for vision, hearing, contraception, or obesity treatment

4. The National Risk Pool (PCIP) Jean P. Hall A temporary bridge program under ACA to make coverage available to people with pre-existing conditions until 2014, when insurers will no longer be able to deny coverage based on health status Coverage level of the PCIP is similar to that of Bronze coverage in the Exchange Premiums and deductibles are less than in many state pool plans, but participants are still likely to be underinsured A person with $50,000 annual income and $10,000 in medical costs would pay up to 28% of income for premiums, deductibles, and co-insurance (see Commonwealth Brief)

5. The Kansas DMIE Intervention Jean P. Hall Medicaid-like coverage as wraparound to state risk pool benefits Premium subsidized to $152/month; no deductibles, no coinsurance and $3 co-pays Added dental, vision, and hearing coverage; increased coverage for mental health, prescriptions, home health, and preventive care Vocational rehabilitation and worksite assessment services Nurse case management services

6. Data sources Jean P. Hall • Eleven focus groups (n=67); 6 with intervention group and 5 with control group members • Telephone surveys with entire sample • Health status • Work efforts • Medical debt • Experiences with the risk pool • Analysis of claims data • Co-morbidities • Out-of-pocket costs

7. Participant demographics Jean P. Hall 50% male; 99% white 50.6 years mean age 71% are self-employed; 45% work <40 hours/week $49,970 average individual income 80% had some college; 45% had a four-year degree or higher Experience many chronic conditions including, orthopedic, diabetes, mental illness, cardiovascular, respiratory, neurological, cancers, obesity, etc. 25% report medical debt

8. 1. High premiums and deductibles limit ability to afford even basic services Focus Group Findings: 3 Themes Jean P. Hall Choose higher deductibles to obtain affordable premiums (more than half >$2500) Delay or forgo care including diagnostic, preventive, and treatment “Save up” visits and surgeries until they meet deductible Stop care at start of calendar year

9. 2. Prescription costs are particularly problematic and compliance is poor Jean P. Hall Use free samples, generics, double-dose whenever possible Refuse, delay, reduce dosage, skip doses or use drugs no longer prescribed “I cut my insulin in half.” “It’s not like you’re really taking risks; you’re taking responsibility for your own medical care.” “Now that I’ve gotten the lower premiums and can afford the medication, I take the pills every day exactly like they’re written on the prescription bottle and check my sugar three times a day like I’m supposed to… because even the little box of strips can cost $85 a box.”

10. 3. Delay or forfeit strategies increase stress and diminish health and quality of life Jean P. Hall “If somebody says you ought to do this [medical test] and you’re saying I don’t think I can because I can’t afford it… and then you go home at night and say ‘did I do the right thing?’ That eats on people.” “You’re going ‘is this other pain something I should have gotten tested?’ I couldn’t afford it, but you know you worry.” [from a breast cancer survivor]

11. Discussion and Implications Jean P. Hall Most in the study were well-educated and middle class; they knew they needed services and medications but could not afford them Underinsurance may be as big a barrier to access as uninsurance, especially for people with chronic conditions When provided DMIE benefits and relieved of cost burdens, participants increased use of medically appropriate services and had better outcomes

12. Health Status Outcomes Jean P. Hall

13. Employment and Disability Outcomes Jean P. Hall “As a result of this program I am much healthier today than I was prior to the program. I felt better and therefore I was a better employee. My employer thought so also, because I was offered to go to permanent part-time and was able to be covered [by] their health insurance.” 17 months after enrollment, 7.3% of control group vs 2.8% of intervention group members were not working (p<0.05)* When limited to those working 90 or fewer hours per month, the DMIE was associated with a significant decline in disability applications of 9.3 percentage points (p=0.02).* *Whalen et al, 2011, DMIE Final Report

14. What are the implications for health reform? Jean P. Hall People with chronic conditions or disabilities who are self-employed or do not qualify for employer-based coverage will likely acquire insurance through the Medicaid expansion or the Exchange. If these programs expand coverage primarily through plans with high cost-sharing, the benefits of coverage may be muted. The newly insured may need assistance understanding/optimally utilizing their coverage. Wraparound coverage to existing plans is a viable and effective strategy for meeting the needs of people with disabilities/chronic conditions—such coverage improved health and employment outcomes in the DMIE.

15. Examples from the Exchange * Premiums from the Kaiser Family Foundation on-line calculator; **Bronze level coverage has a minimum 60% actuarial value. Jean P. Hall • Individual age 50 and income at 435% of poverty level ($50,000) and $10,500 in medical costs: • Annual premiums=$6978* (14% of income) • Annual out of pocket = $4,900 (9.6% of income) assuming $2500 deductible and 30% co-insurance** • Cost of premiums + OOP = 23.8% of income • Individual making $35,666 (310%FPL): • $3388 annual premiums (9.5% of income) • $4167 maximum OOP (12% of income) • =21% of income spent on health care

16. For additional information Jean P. Hall Hall, J.P. & Moore, J.M. (2011, June). Early Implementation of Pre-Existing Condition Insurance Plans: Providing an Interim Safety Net for the Uninsurable, The Commonwealth Fund, Publication #1509. Hall, J.P. & Moore, J.M. and Welch, G.W. (2011). Preventing disability among working participants in Kansas’ high-risk insurance pool: Implications for health reform. Journal of Vocational Rehabilitation, 34(2), 119-128. Hall, J.P., Carroll, S., & Moore, J.M. (2010). Health care behaviors and decision-making processes among enrollees in a state high risk insurance pool: Focus group findings. American Journal of Health Promotion, 24(5), 304-310. Hall, J.P., & Moore, J.M. (2008). Does high risk pool coverage meet the needs of a population at risk for disability? Inquiry, 45(3), 340-352.