Students in the Master of Public Policy program at Duke’s Sanford School of Public Policy spent part of their spring semester examining a policy issue for the N.C. Center for Public Policy Research.
The students investigated Alzheimer’s disease in North Carolina, looking at the rates of the disease, caregiving options for patients, and also looked to other states to learn about different options for comprehensive plans.
The students’ report, which includes recommendations for action in our state, is presented in this series of blog posts. Today’s post outlines how coverage for Alzheimer’s care continues to change, and touches on mental health reform in the state. Read previous posts here:
Part One in the series provides an introduction to Alzheimer’s disease and an overview of prevalence rates
Part Two discusses caregiving options
Part Three takes a look at programs and services supporting Alzheimer’s patients in N.C.
Note: The pictures used in this series are from the Alzheimer’s North Carolina organization, a nonprofit dedicated to education, support, and advocacy for Alzheimer’s patients and their families. Visit their website here: http://www.alznc.org/.
Pictures also featured from The A.R.C. Community, long-term care facilities in North Carolina for residents with Alzheimer’s. www.thearccommunity.com
Medicaid and Alzheimer’s disease
As the primary payer for nursing home care, state Medicaid policies directly affect Alzheimer’s patients and caregivers. Many Alzheimer’s patients and caregivers who do not initially qualify for Medicaid at the time of diagnosis will qualify for Medicaid eventually. They will either “spend down” their assets to become eligible, or simply lose enough wealth due to the extraordinary care costs of Alzheimer’s.
In 1999, the Supreme Court ruled that under the Americans with Disabilities Act of 1990 (ADA) reimbursement rates must be the same for all disabled Medicaid beneficiaries. For over a decade, North Carolina had paid a higher Medicaid reimbursement rate for beneficiaries living in group homes, including Alzheimer’s special care units and adult care homes, than to beneficiaries who opted to receive services in their own homes (Hoban, 2013). The state also set higher eligibility criteria for beneficiaries receiving assistance at home, creating an incentive to seek institutional care. North Carolina maintained dual reimbursement rates and eligibility criteria until a 2011 investigation by the Department of Justice found that North Carolina was violating the ADA. The state responded by cutting benefits for all group home residents rather than increasing Medicaid benefits for disabled beneficiaries living at home (Hoban, 2012b).
There is a three-year moratorium, from July 31, 2013 through July 1, 2016, on new licenses for Alzheimer’s special care units.
Alzheimer’s special care units and adult care homes saw dramatic funding cuts overnight (Hoban 2012b). Between 3,000 and 4,000 Alzheimer’s patients living in special care units were in danger of being forced out of their care facilities on January 1, 2013 (Leslie and Morgan, 2013). The legislature passed a stopgap bill in February of 2013 (“Group Homes/Special Care Units,” 2013). It established an emergency fund of $39.7 million for Alzheimer’s patients and other people living in group homes. When the stopgap measure expired in July of 2013, the legislature allocated an additional $4.6 million in bridge funding (Oakes, 2013).
The NC state budget for fiscal year 2013-2014 included a three-year moratorium, with exceptions, on issuing new licenses for Alzheimer’s special care units. The moratorium is set to end on July 1, 2016. The current NC state budget, passed in August of 2014, included further cuts to Medicaid, hospitals, and group homes, including Alzheimer’s special care units. Without additional funding, group homes are experiencing serious financial problems (Hoban, Singh and Namkoong, 2014). Rather than providing for group home funding in the state budget, the legislature decided that North Carolina’s Department of Health and Human Services (DHHS) would be responsible for devising a permanent budgetary solution to fund these facilities (Hoban, Singh and Namkoong, 2015).
In 2001, the NC legislature privatized the delivery of mental health services. As a result, many qualified public-sector mental health workers left the state. Additionally, quality of care decreased substantially, as private providers only offered the most profitable services, typically low-impact community services such as tutoring and running errands for clients provided by unlicensed, low-paid personnel. More costly intensive services that many clients needed, such as home care, were not offered (In the Public Interest, 2015).
Many mentally ill individuals, including those with Alzheimer’s, ended up in jail or the ER, and they did not receive the support services or case work they needed. Alzheimer’s patients are already more likely to sustain injuries that require hospital visits. A weak mental health system exacerbates the issue. ER personnel are not trained in how to deal with Alzheimer’s patients, thus treatment times are longer, putting an extra burden on hospitals that are already running low in ER beds (In the Public Interest, 2015).
More money is being funneled into providing mental health services in prison than in the community. Alzheimer’s patients and their caregivers benefit most from community programs. The longer that patients stay in the community, the less costly they are to the state. Mental health reform that focuses on community-based supports would be an integral part of a state Alzheimer’s strategy (In the Public Interest, 2015).
Note: Here is information about this student project, provided by the Duke Sanford School of Public Policy.
This student presentation was prepared during the spring of 2015 in partial completion of the requirements for PUBPOL 804, a course in the Master of Public Policy Program at the Sanford School of Public Policy at Duke University. The research, analysis, policy alternatives, and recommendations contained in this report are the work of the student team that authored the report, and do not represent the official or unofficial views of the Sanford School of Public Policy or of Duke University. Without the specific permission of its authors, this report may not be used or cited for any purpose other than to inform the client organization about the subject matter. The authors relied in many instances on data provided to them by the client and related organizations and make no independent representations as to the accuracy of the data.
- Works Cited for Full Project
ACT on Alzheimer’s. (2014). Retrieved February 17, 2015, from ACT on Alzheimer’s: http://actonalz.org/
Alzheimer Europe. (2013). P8. Dementia-friendly communities. Retrieved February 19, 2015, from
Alzheimer Europe: http://www.alzheimer-europe.org/Conferences/Previousconferences/ 2013-St-Julian-s/Detailed-programme-abstracts-and-presentations/P8.-Dementia-friendly-communities
Alzheimer’s Association “State Alzheimer’s Disease Plans.” (2015, February 1). Retrieved February
20, 2015, from http://act.alz.org/site/DocServer/STATE_AD_PLANS.pdf?docID=4641
Alzheimer’s Association. (2011). The National Alzheimer’s Project Act.” Alzheimer’s Association,
2014. Retrieved April 9, 2015, from http://napa.alz.org/
Alzheimer’s Association. (2014). “National Plan to Address Alzheimer’s Disease,” Alzheimer’s
Association, 2014. Retrieved April 9, 2015, from http://act.alz.org/site/DocServer/NatlPlan.pdf?docID=5568
Alzheimer’s Association. (2015) 2015 Alzheimer’s disease Facts and Figures. Alzheimer’s
Association. Retrieved April 9, 2015, from http://www.alz.org/facts/downloads/facts_figures_2015.pdf
Assistant Secretary for Planning and Evaluation. (2014). National Alzheimer’s Project Act. U.S.
Department of Health and Human Services, 2014. Retrieved April 9, 2015, from http://aspe.hhs.gov/daltcp/napa/
Bratts-Brown, W. (2013, December 27). Memorandum: CAP/DA Slot Utilization and Waitlist Management. Retrieved April 8, 2015, from http://www.ncdhhs.gov/dma/cap/CAPDA_Slot_Utilization_Waitlist_Mgmt.pdf
Bynum, J. (2014). The Long Reach of Alzheimer’s disease: Patients, Practice, And Policy. Health Affairs, 33(4), 534-540. Retrieved February 2, 2015, from http://content.healthaffairs.org.proxy.lib.duke.edu/content/33/4/534.full
Carter, Christine L., Resnick, Eileen M, Mallampalli, Monica, Kalbarczyk, Anna. (2012) Sex and Gender Differences in Alzheimer’s disease: Recommendations for Future Research. Journal of Women’s Health 21(10): 1018-1023.
Centers for Disease Control and Prevention, National Center for Health Statistics. Compressed Mortality File 1999-2013 on CDC WONDER Online Database, released October 2014. Data are from the Compressed Mortality File 1999-2013 Series 20 No. 2S, 2014, as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program. Accessed at http://wonder.cdc.gov/cmf-icd10.html on Apr 5, 2015 2:14:16 PM
Centers for Disease Control and Prevention. Healthy Aging: Alzheimer’s Disease. Retrieved April 17, 2015 from http://www.cdc.gov/aging/aginginfo/alzheimers.htm
Chin, Alexander L., Selamawit Negash, and Roy Hamilton. (2011) Diversity And Disparity In Dementia. Alzheimer Disease & Associated Disorders 25(3): 187-195.
Facilities with Special Care Units. (2015, March 16). Retrieved March 20, 2015, from http://www.ncdhhs.gov/dhsr/acls/pdf/sculist.pdf
Foldes, S. and Long, K (2014, May).The Minnesota Economic Model of Dementia: Demonstrating Healthcare Cost Savings with the New York University Caregiver Support Intervention. Retrieved April 11, 2015, from
Fox, C., Maidment, I., Mooniz-Cook, E., White, J., Thyrian, J. R., Young, J., et al. (2013). Optimising primary care for people with dementia. Mental Health in Family Medicine. 10 (3), 143–151.
Gaugler, J. E., Yu, F., Davila, H. W., & Shippee, T. (2014). Alzheimer’s disease And Nursing Homes. Health Affairs, 33(4), 650-657. http://content.healthaffairs.org.proxy.lib.duke.edu/content/33/4/650.full.pdf+html
Georgia Department of Human Services “Georgia Alzheimer’s Disease and Related Dementias State Plan.” (2014, June 23). Retrieved February 19, 2015, from https://gov.georgia.gov/sites/gov.georgia.gov/files/related_file/document/SB%2014.pdf
Grant launches collaborative effort to combat Alzheimer’s (2015). Retrieved April 11, 2015, from http://dukeforward.duke.edu/article/grant-launches-collaborative-effort-to-combatalzheimers.
Group Homes/Special Care Units. (2013, March 6). Retrieved February 17, 2015, from http://www.wral.com/news/state/nccapitol/asset_gallery/11998359/
Gurland, Barry J.; Wilder, David E.; Lantigua, Rafael; Sterm, Yakov; Chen, Jiming; Killeffer, Eloise H.P., Mayeux, Richard. (1999). Rates of dementia in three ethnracial groups. International Journal of Geriatric Psychiatry, 14, 481-493.
Hampel, H., Frölich, L., Hoffman, W., Prvulovic, D., Riepe, M. W., Stefan, T., et al. (2011). The future of Alzheimer’s disease: The next 10 years. Progress in Neurobiology, 95, 718–728.
Hebert, L. E. (2001). Is The Risk Of Developing Alzheimer’s disease Greater For Women Than For Men? American Journal of Epidemiology 153 (2), 132-136.
Hebert, Liesi E.; Weuve, Jennifer; Scherr; Paul A., et al. (2013, February 6). Alzheimer disease in the United States (2010−2050) estimated using the 2010 census. Neurology published online. DOI: DOI 10.1212/WNL.0b013e31828726f5
a. Hoban, R. (2012, November 4). Rate Cuts Threaten Dementia Care Facilities. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/2013/11/04/rate-cuts-threatendementia- care-facilities
b.Hoban, R. (2012, December 14). Alzheimer’s Patients Caught Up in State Medicaid Service Changes. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/2012/12/14/alzheimers-patients-caught-up-in-statemedicaid- service-changes/
Hoban R. (2013, February 4). No Fix in Sight Yet for Alzheimer’s Special Care Units. Retrieved April 28, 2015, from http://www.northcarolinahealthnews.org/2013/02/04/no-fix-in-sightyet- for-alzheimers-special-care-units/
Hoban, R. (2013, June 11). House & Senate Budgets Compared. Retrieved April 7, 2015, from http://www.northcarolinahealthnews.org/2013/06/11/house-senate-budgets-compared/).Hoban, R., Singh, J., &
Namkoong, H. (2014, August 1). Hospitals, Adult Care Homes Big Losers in Budget. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/2014/08/01/hospitals-adult-care-homes-big-losersin- budget/
Hoban, R., Singh, J., & Namkoong, H. (2015). FINAL: The Health and Human Services Budgets Compared. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/thehealth- and-human-services-budgets compared/
In the Public Interest. “North Carolina Mental Health System.” (2015). Retrieved April 29, 2015,
Kelly, C., & Williams, I. (2007). Providing Dementia-Specific Services to Family Caregivers: North Carolina’s Project C.A.R.E. Program. Journal of Applied Gerontology, 26(4), 399-412. Retrieved February 18, 2015, from http://www.ncdhhs.gov/aging/ad/Providing_Dementia- Specific_Services.pdf
Land of Sky Regional Council: Project C.A.R.E. (2012). Retrieved April 8, 2015, from http://www.landofsky.org/projectcare
Leslie, L., & Morgan, D. (2012, December 13). Medicaid benefit cuts impact thousands of Alzheimer’s patients. Retrieved February 17, 2015, from http://www.wral.com/medicaidbenefit- cuts-impact-thousands-of-alzheimer-s-patients/11874686/
Lin, P. J., Fillit, H. M., Cohen, J. T., & Neumann, P. J. (2013). Potentially avoidable hospitalizations among Medicare beneficiaries with Alzheimer’s disease and related disorders. Alzheimer’s & Dementia, 9(1), 30-38. http://www.sciencedirect.com/science/article/pii/S1552526012025204
Long, K. H., Moriarty, J. P., Mittelman, M. S., & Foldes, S. S. (2014). Estimating The Potential Cost Savings From The New York University Caregiver Intervention In Minnesota. Health Affairs, 33 (4), 596-604.
Mastry, Olivia. (2015, March). Speech to the North Carolina Taskforce on Alzheimer’s disease and
Miller, Debra. (2011, September). Alzheimer’s disease and Caregiving. The Council of State
Governments Knowledge Center. Retrieved April 11, 2015, from: http://knowledgecenter.csg.org/kc/content/Capitol-Research-alzheimers-disease-andcargiving
Minnesota Board on Aging (2011). Preparing Minnesota for Alzheimer’s: the Budgetary, Social and Personal Impacts. Retrieved February 17, 2015, from: http://www.alz.org/national/documents/MN_state_plan.pdf
Morgan, J. (2008). Union County Community Health Assessment 2008. Retrieved April 1, 2015, from http://www.co.union.nc.us/Portals/0/Health/Documents/CHA2008.pdf
Morgan, J. (2012). Union County 2012 Community Health Assessment. Retrieved April 1, 2015, from http://www.co.union.nc.us/Portals/0/Health/Documents/CHA2012.pdf
National Alliance for Caregiving & Alzheimer’s Foundation of America. (2014). From plan to practice: Implementing the National Alzheimer’s Plan in Your State. National Alliance for Caregiving.NC PACE Association: History and Growth. (2015). Retrieved April 9, 2015, from http://ncpace.org/pace-in-nc/history-and-growth
NC PACE Association: PACE Sites. (2015). Retrieved April 9, 2015, from http://ncpace.org/pace-innc/ pace-sites
North Carolina Community Alternatives Program for Disabled Adults Waiver (CAP/DA) (2014, March). Retrieved April 7, 2015, from http://www.payingforseniorcare.com/medicaidwaivers/ nc-community-alternatives-program for-disabled-adults.html
North Carolina Department of Health and Human Services. “Facilities with Special Care Unit Beds.” (2015, April 16). Retrieved April 29, 2015, from http://www.ncdhhs.gov/dhsr/acls/pdf/sculist.pdf
North Carolina Division of Aging and Adult Services: Home and Community Care Block Grant (2013, March 14). Retrieved April 9, 2015, from http://www.ncdhhs.gov/aging/manual/hccbg/hccbg.htm
North Carolina Medicaid Special Bulletin: Cap Limits on PACE Enrollments for State Fiscal Year 2014 (2014, May). Retrieved April 10, 2015, from http://www.ncdhhs.gov/dma/bulletin/pdfbulletin/0514_Special_Bulletin_PACE.pdf
North Carolina Mental Health System. (2015). In the Public Interest. Retrieved April 10, 2015, from http://www.inthepublicinterest.org/case/north-carolina-mental-health-system
North Carolina’s Family Caregiver Support Program. (2014, December 11). Retrieved February 1, 2015, from http://www.ncdhhs.gov/aging/fchome.htm
Oakes, A. (2013, September 3). NC continues stopgap funding for group homes. Retrieved February 17, 2015, from http://www.wataugademocrat.com/news/nc-continues-stopgap-funding-forgroup- homes/article_1b33c8c6-e796-5614-804f-2977c120412a.html
Reauthorize the Older Americans Act. (2015, March 1). Retrieved April 8, 2015, from http://www.aarp.org/politics-society/advocacy/info-2014/where-aarp-stands-older-americansact.html
Reinhard, S., Feinberg, L., Choula, R. (2012). A Call to Action: What Experts Say Needs to be Done to Meet the Challenges of Family Caregiving. AARP Public Policy Institute. Retrieved April 11, 2015, from Reitz, C., Brayne, C., & Mayeux, R. (2011). Epidemiology of Alzheimer disease. Nature Reviews Neurology, 7, 137-152.
Senate Bill 466 (2015). Retrieved April 11, 2015, from http://www.ncleg.net/gascripts/BillLookUp/BillLookUp.pl?Session=2013&BillID=s466
Shaw, L. (2013). Response to NC Department of Health and Human Services Division of Medical Assistance Request For Information RFI-DMA 100-13. Retrieved April 8, 2015, from http://ncpace.org/images/uploads/NC_PACE-DMA100-13_FINAL.pdf
Social Worker (BSW) Salaries. (2015). Retrieved April 11, 2015, from http://www.payscale.com/research/US/Job=Social_Worker_(BSW)/Salary#CareerPaths
Sosa-Ortiz, A., Acosta-Castillo, I., & Prince, M. J. (2012). Epidemiology of Dementias and Alzheimer’s disease. Archives of Medical Research, 43, 600-608. ↩