Four Dimensions Of LTSS With Each Having Between 3 And 9 Data Indicators

Raising Expectations 2014, 2nd edition

A Report Card for Rhode Island Long-Term Services and Supports System Performance

RI Long Term Services & Supports

AARP RI January 2015

Prepared by: Maureen Maigret, Policy Consultant

Page | 1 Table of Contents

1 Executive Summary

4 Why is This Report Important?

5 Background

7 Impact of Improving Rhode Island’s Performance

8 LTSS Scorecard Rankings for Rhode Island

9 New England States’ Performance

11 Rhode Island’s Performance

14 2011 Recommended LTSS Policy Actions Review and New Recommendations

17 Discussion of 2011 Policy Recommendations and Action to Date

29 Notes

32 Appendix A Raising Expectations 2014, 2ND edition

EXECUTIVE SUMMARY national experts. States were measured, ranked and grouped into quartiles. In just over a decade the first wave of baby Performance changes in 19 of the 26 boomers will reach their 80’s heightening indicators where comparable data was the demand for Long Term Services and available was assessed to show trends. Supports (LTSS). The nation faces unprecedented challenges in transforming Ranked at 38, RI had the lowest rank of all our LTSS system to meet this demand. We New England states. Compared to the 2011 need policy reforms that foster Scorecard, its performance improvements independence among older adults and were minimal. Rhode Island ranked in the nd persons with disabilities and that support the 2 quartile in only one dimension, Support family caregivers who assist them. Rhode for Family Caregivers. In all four other rd Island is exceptionally challenged by both dimensions it was in the 3 quartile. The its demographics and current long term care state improved performance in eight policies. It has the highest percent of persons indicators but this did not necessarily result age 85 and over, ranks 4th highest among in an improved ranking. It saw little to no states in nursing home residents per 1,000 change in nine indicators and lost ground in persons age 65 and over, has a high percent two (See Appendix). Its best progress was of low-care nursing home residents and made in the Legal and System Supports spends a far higher percent of its LTSS dimension largely due to the 2013 passage dollars than the national average on nursing of the Temporary Caregiver Insurance home care as opposed to home and program and Caregiver Assessment community-based services. It also has some requirements for Medicaid Home and of the highest long term care cost burdens in Community services. the country making private pay long term services unaffordable for the vast majority Rhode Island can not afford this of older households. sluggish pace of reform. It must move faster to adopt best practices and The 2014 edition of Raising Expectations, innovations in LTSS, and seek to raise A State Scorecard on Long-Term Services and Supports for Older Adults, People with the bar to become a higher performing Physical Disabilities, and Family LTSS state. Caregivers (the Scorecard) updates and expands the 2011 edition. The Scorecard The 2014 Scorecard shows if Rhode Island was the first multidimensional assessment of improved its performance to the level of the state performance of Long-Term Supports highest performing state 1,466 more new and Services (LTSS). The 2014 Scorecard users of Medicaid LTSS would first receive measures how well the nation and each of services in home and community settings the states is doing on providing LTSS based instead of nursing homes and 1,382 nursing on five dimensions that include a total of 26 home residents with low care needs would indicators developed with input from a panel be able to receive LTSS in the community. Such results would allow persons to remain long term care and to strengthen family living at home longer and, over time, could caregiver supports. Six recommendations achieve cost savings for the state. showing partial implementation include expansion of the home and community co- Two measures showing the strongest pay program and authority (but not relationship to overall performance were: (1) implementation) under the 1115 Medicaid a state’s efforts to provide LTSS to low- and waiver renewal to provide expedited moderate-income adults age 21+ with eligibility for Medicaid HCBS and for a disabilities through their Medicaid or other limited increase in the monthly maintenance state-funded programs, and (2) balancing allowance for persons on Medicaid HCBS spending on LTSS, shifting funds away who transition out of nursing homes. Nine from an over-reliance on nursing homes to recommendations, although still relevant, support more funding of home-community- have not been implemented. These include based services (HCBS). On the first, RI those to expand residential care options ranked #18 in 2009 and showed (regulations for supportive adult homes and performance improvement from 2007. On expansion of assisted living) and to provide the second, the Scorecard reported 16.3% of a real-time web-based interactive LTSS Rhode Island LTSS spending going to information and resource site. HCBS, ranking it #50. More recent data shows the state increased the percent of In addition to the 19 recommendations made LTSS spending on HCBS for elders and in 2012, five new policy actions to improve adults with disabilities to 18.8% in 2012, and transform Rhode Island’s LTSS system still far below the 38.8% national average. are recommended here.

The good news is that Rhode Island ranked  Provide state funds to maintain a robust in the top ten in four indicators: Aging and Disability Resource Center 1. Percent of Long-Stay Nursing Home  Develop an on-line benefits screening Residents Hospitalized within a Six- tool to assist elders in accessing income- month Period (#3) assistance benefits and conduct outreach 2. Family Caregivers Without much programs to increase participation. Stress or Worry (#3)  Review the state Nurse Practice Act with 3. Legal and System Supports for the goal of allowing for nurse delegation Family Caregivers (#7) of certain health maintenance and 4. Aging and Disability Resource nursing tasks to be performed by direct Center composite functions (#10) care workers  Require hospitals to provide family However, it ranked in the bottom five states caregiver education and instruction for six indicators and on more than half it regarding nursing care needs when nd ranked below the 2 quartile. patient is being discharged.  Explore using emerging technologies to In a follow up report to 2011 Scorecard, the better serve HCBS clients RI AARP issued a report in 2012 that made 19 recommendations to improve Rhode The state has opportunities to improve its Island’s LTSS performance. A review of LTSS system in a number of important these recommendations shows four have indicators but raising the bar is not an easy been implemented, most notably those to task. It will require a much faster pace, a promote coordination of primary, acute and thoughtful analysis of which reforms will choice and moderate LTSS cost trends by lead to the most overall improvement and making greater use of home and community the willingness of state leaders to make based support services and innovative care investments that, over time, should improve models including use of emerging care outcomes, give consumers greater technology. Raising Expectations 2014, 2ND edition

WHY IS THIS REPORT IMPORTANT?

The nation faces unprecedented challenges in promoting public policies needed to transform our Long-Term Services and Supports (LTSS) system to promote independence among older adults and persons with disabilities and to support the family caregivers who assist them. In just over a decade the first wave of baby boomers will reach their 80’s heightening the demand for LTSS.

The challenge facing Rhode Island is exacerbated by both its demographics and state long term care policy.

 RI’s older population is projected to increase by 94,000 persons by 2030

 RI has the highest percent of persons age 85 and over (those most likely to need LTSS)

 RI ranks 4th highest in nursing home residents per 1,000 persons age 65 and over

 RI is near the bottom in percent of its LTSS dollars spent on home and community-based services for older adults and persons with disabilities

 RI is in the bottom quartile for percent of low-care need residents in nursing homes

 RI has the highest private home care costs (30 hours/week) as a percent of median income of older households

 RI has the fourth highest private nursing home costs as a percent of median income of older households

Page | 6 Raising Expectations 2014, 2ND edition

BACKGROUND

The 2014 2nd edition of Raising Expectations, A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers (the Scorecard) updates and expands the 2011 edition. The Scorecard was the first multidimensional assessment of state performance of Long-Term Supports and Services (LTSS). Supported jointly by AARP, the Commonwealth Fund and the SCAN Foundation, the Scorecard’s purpose was to develop a comparative analysis of state LTSS systems and to promote positive action by states to establish more effective LTSS policies. The first Scorecard measured four key dimensions of LTSS: (1) affordability and access, (2) choice of setting and provider, (3) quality of life and quality of care, and (4) support for family caregivers. A fifth dimension, effective transitions, was added to the 2nd edition. Each dimension has from three to six data indicators for a total of 26 indicators. Several of the indicators are subdivided into separate elements with a composite score assigned for the indicator. A list of dimensions with corresponding indicators for RI is found in Appendix A.

The 2014 Scorecard measures how well the nation and each of the states is doing on providing LTSS. It also assesses change in 19 of the 26 indicators where comparable data was available to show trends. States were measured on each of the indicators, composite rankings for each dimension were developed and states were ranked (with one being the best performer) and grouped into quartiles.

In areas where change could be measured, the 2014 Scorecard shows RI improved its performance in eight indicators. This improvement was from its base measure in the 2011 Scorecard and did not necessarily result in an improved ranking. It saw little to no change in nine indicators and lost ground in two. The state showed significant progress in the Legal and System Supports dimension largely due to the 2013 passage of the Temporary Caregiver Insurance program and Caregiver Assessment requirements for Medicaid Home and Community services. RI continues to perform near the bottom for balancing state spending towards home and community-based services. And, based on median state income for older households, it has some of the highest cost burdens for private pay long term care – the highest in the nation for home health and fourth highest for nursing home care – making private pay long term services unaffordable for the vast majority of older households.

Rhode Island can not afford this sluggish pace of reform. It must make a commitment to move faster, to adopt best practices and innovations in LTSS, and seek to become a higher performing LTSS state.

Scorecard results show great variation among the states with the top performing states differing markedly from poorer performers. Despite the tremendous variation among states, the 2014 Scorecard noted several measures appearing to drive overall system performance. Two showing

Page | 7 the strongest relationship to overall performance were: (1) a state’s efforts to provide LTSS to low- and moderate-income adults age 21+ with disabilities through their Medicaid or other state- funded programs, and (2) balancing spending on LTSS, shifting funds away from an over- reliance on nursing homes to support more funding of home-community-based services (HCBS). On the first, RI ranked #18 in 2009 and showed performance improvement from 2007.1

On the second, the Scorecard reported 16.3% of RI LTSS spending going to HCBS, ranking it #50. More recent data shows the state increased the percent of LTSS spending.. on HCBS for elders and adults with disabilities to 18.8% in 2012.2 However, this is still far below the average 62.5% spent on HCBS by the top five states reported in the Scorecard and the average 38.8% for the nation in FY2012. Another measure related to balancing is where a person new to state LTSS receives those services, in a nursing home or with HCBS. Ranked #34, RI showed no improvement in this area with just 37.6% receiving state LTSS in the community first, far below the U.S. mean of 53.6%. Raising Expectations 2014, 2ND edition

IMPACT OF IMPROVING RHODE ISLAND’S PERFORMANCE

The 2014 Scorecard shows if Rhode Island improved its performance to the level of the highest performing state the result would be:

 1,466 more new users of Medicaid LTSS first receiving services in home and community based settings instead of nursing homes.

 1,382 nursing home residents with low care needs able to receive LTSS in the community.

 716 more people who have been in a nursing home for 90 days or more would be able to move back to the community.

 314 more people entering nursing homes would be able to return to the community within 100 days.

LTSS SCORECARD RANKINGS FOR RHODE ISLAND

This Report will:

(1) Review Rhode Island’s 2014 Scorecard performance results showing where we have improved or declined,

(2) Compare RI’s performance to the other New England states,

(3) Provide available updated data and/or information on state policy changes, and

(4) Review recommendations from the 2011 AARP Scorecard for Rhode Island noting those that are still relevant and where progress has been made. It will also offer additional recommendations for improving the state’s performance.

Rhode Island 2014 Scorecard Overall Performance Rankings

RI Ranked 38th in Overall Performance (3rd Quartile)*

Affordability and Access: Choice of Setting & Provider: Rank 36, 3rd Quartile Rank 38, 3rd Quartile

Quality of Life & Quality of Care: Support for Family Caregivers: Rank 31, 3rd Quartile Rank 19, 2nd Quartile

Effective Transitions: Rank 31, 3rd Quartile (new in 2014 Scorecard)

Note: The 2014 Scorecard made some methodological changes and adjusted base rankings for 2011 accordingly. This resulted in RI ranking #38 in 2011 showing no change in overall ranking for 2014. See Appendix for Summary Chart of all RI Indicators and Rankings

NEW ENGLAND STATES’ PERFORMANCE

2014 NE States Afford- Choice Quality Care- Effective 2012 NH Overall ability/ giver Transitions Median 65+ residents Performance Rank Access Support Hshld per Income/ 1,000 % 65+ 65+ belowFPL

Vt #6 #15 #8 #17 #12 #5 $36,848/7.5% 32 (1st Qrtl) Maine #10 #23 #12 #23 #29 #6 $33,358/8.2% 30 (1stQrtl) CT #12 #4 #22 #6 #30 #39 $41,947/6.9% 52 (1stQrtl) % MA #18 #17 #14 #15 #41 #26 $38,233/9.3% 48 (2ndQrtl) NH #32 #29 #39 #13 #38 #19 $41,445/6.6% 39 (3rdQrtl) RI # 38 #36 #38 #31 #19 #31 $35,510/9.7% 53 (3rdQrtl)

Rhode Island had the lowest overall rank of all New England states

Rhode Island had next to the lowest median income for households headed by persons age 65 and over, the highest percent of older households living below the federal poverty level and the highest rate of nursing home residents per 1,000 persons age 65 and over. All New England states were in the bottom quartile for cost/affordability of nursing home care. Connecticut was in the top quartile for Affordability of Home Health, however, its higher median income put its Home Health cost at 77% of median income (lower than the US average) ranking it #9 for this indicator. All other New England states ranked #39 or lower for affordability of home health. RI had the second highest rank for Caregiver Support. It had the second to lowest rank for Choice of Setting and Provider and Effective Transitions. Rhode Island and New Hampshire were in bottom quartile for LTSS percent spent for HCBS.

Page | 11 All New England states except Rhode Island were in the top 1st or 2nd quartiles for Quality. The state scored lower in this indicator due to its ranking in the bottom quartile for Life Satisfaction for Persons with Disabilities and Employment for Persons with Disabilities. In the new Effective Transitions dimension, Rhode Island measured poorly due to its high percent of low-care nursing home residents. This measure, based on an analysis of the 2010 Minimum Data Set and Resource Utilization Groups classification, has not been updated since that time.3 If Rhode Island improved in moving long-stay nursing home residents (those with stays of 90 days and more) back to the community and in reducing hospital admissions for persons receiving home health services, it would do better in the Effective Transition dimension. Raising Expectations 2014, 2ND edition

RHODE ISLAND’S PERFORMANCE

Gold Star Grades -- Indicators of Rhode Island’s Best Performance

Rhode Island ranked in the Top Quartile for 4 indicators:

1) Percent of Long-Stay Nursing Home Residents Hospitalized within a Six-month Period (Top 5 at #3)

2) Family Caregivers Without Much Stress or Worry (Top 5 at #3)

3) Legal and System Supports for Family Caregivers (Top 10 at #7)

4) Aging and Disability Resource Center composite functions (Top 10 @ #10)

The Barely Passing Grades --Indicators of Rhode Island’s Mediocre Performance

Rhode Island ranked in the 3rd Quartile for 8 indicators:

1) Private Long Term Care Insurance Policies in Effect per 1,000 Population Age 40+: #30 (same as 2011 edition). RI-40 policies; US-44 policies

2) Percent of New Medicaid LTSS Users First Receiving Services in the community: #34 (same as 2011 edition). RI-37.6%; US-53.6%

3) Home Health and Personal Care Aides per 1,000 persons age 65+ (2010-2012): # 31 (improved from 20 to 30 per 1,000 age 65+). RI-30 aides; US-40 aides

4) Assisted Living and Residential Care Units per 1,000 persons age 65+ (2012-2013): #28 (same 25% rate as 2011). RI-25 units; US-31 units

5) Percent of Home Health Patients with a Hospital Admission (2012): #28. RI-25.7%; US-26.2%. Note: Data in the Scorecard is based on 2012 CMS Oasis data. More recent data from CMS shows RI improved slightly going from 25.7% in 2012 to 24% from June 2013 to July 2014 for persons who are admitted to hospital for at least 24 hours while in Home Health Care.5//

Page | 13 6) Percent of New Nursing Home Stays Lasting 100 Days or More (2009): #33 RI-21.3%; ; US-20.6%

7) Percent of People with 90+day Nursing Home Stays Successfully Transitioning Back to the Community (2009): Rank #33. RI-6.8%; US-8.1%

8) Persons with Disabilities Life Satisfaction (2010): #40 @ 84.9% showed improvement from 80.2% in 2009. US-85.9%

Failing Grades -- Indicators of Rhode Island’s Worst Performance

Rhode Island ranked in the Bottom Five States for 6 indicators:

1) Nursing Home Cost: #48 @ $111,325 annual cost for private pay in 2013 which was 352% of median annual income ($35,510 in 2012); no change from 2011. US score 246%

2) Home Care Cost: #51 at $35,802 in 2013 (based on 30hrs/wk). Cost was 111% of median annual income. Showed improvement from 2011. US score 84%

3) Medicaid LTSS Balancing Spending: #50 (16.3% in 2011; US score 39.3%) . Note: Updated data shows RI ranking #42 for FY2012 with 18.8% percent spent for HCBS for elders and adults with physical disabilities.

4) Persons with Disabilities Rate of Employment: #51 @13.8% for 2011-12; US score 22.8%. RI score a decline from baseline of 32.6% in 2008-2009.

5) Nurse Delegation: #47 (along with Michigan and Indiana)

6) Nursing Home Low Care Needs: #43 at 18% (2010). US score: 12.3%. Note: No new data available. There is a significant variation reported among the 53 out of 86 nursing homes with reported scores. (range from 11.39% to 49.12%).4

Improving Grades -- Indicators where Rhode Island showed performance improvement over 2011

Rhode Island improved its ranking on 8 indicators:

1) Home Care Cost (@ $35,802 (30hrs/wk) Rank: #51. While RI still ranked at the bottom, costs went from 125% of the median annual income to 111% of median income.

Page | 14 2) Medicaid LTSS participant years per 100 adults age 21+ with disability in nursing homes at or/below 250% poverty in the community: #18 (from 39.1% in 2007 to 46.9% in 2009).

3) ADRC functions. #10 in 2012 (Composite score changes do not allow for measuring state improved score; however RI scored 60 points out of possible 70).

4) Percent of Medicaid and state-funded LTSS spending going to HCBS for older people and adults with physical disabilities (2011): #50 (Scorecard data source showed RI at 16.3% in 2011, an improvement from 14.4% in 2009. More recent data from FFY2012 shows RI at 18.8% with a ranking of #42.)6

5) Home health and personal care aides per 1,000 population age 65+ (2010-12): #31 (from 20 to 30 aides per 1,000 65+)

6) Percent of adults age 18+ with disabilities in the community usually or always getting needed support (2010): #24 (from 64.4% in 2009 to 72.7% in 2010)

7) Percent of adults age 18 with disabilities in the community satisfied or very satisfied with life (2010): #40 (from 80.2% in 2009 to 84.9% in 2010)

8) Legal and system supports for family caregivers (composite) 2012-2013. #7. Passage of a Temporary Caregiver Insurance Law and requirements for caregiver assessments for persons on Medicaid HCBS helped to improve RI ranking.

Based on the Scorecard’s comparative performance results as outlined above, Rhode Island has opportunities to improve its LTSS system in a number of important indicators. Raising the bar for the state’s LTSS system to better serve care recipients and their caregivers is not an easy task. It will require a much faster pace for reform and a thoughtful analysis of which reforms will lead to the most overall improvement and a willingness on the part of state officials to make investments that, over time, should improve care outcomes, give consumers greater choice and moderate LTSS cost trends by making greater use of home and community based support services and innovative care models including use of emerging technology. Raising Expectations 2014, 2ND edition

2011 RECOMMENDED LTSS POLICY ACTIONS REVIEW AND NEW RECOMMENDATIONS

The 2011 State LTSS Scorecard Report presented 16 recommendations for improving Rhode Island LTSS system performance. One of the recommendations, Strengthening Family Caregiver Support Services, had four separate elements making 19 distinct recommendations in all. The table below shows progress in implementing the recommended policy actions. Four of the recommended policy actions have been implemented, most notably those to promote coordination of primary, acute and long term care and to strengthen family caregiver supports. Six have activity underway and are designated as partially implemented. The remaining policy recommendations, although still relevant, have seen scant to no activity. Some of the recommendations are intended to improve the state’s balancing efforts by expanding lower cost residential options as alternatives to nursing homes or providing low-cost needed support services that help maintain persons in their homes. Others are aimed at promoting health and helping to prevent the functional deterioration that triggers the need for LTSS. These should be a priority for action

The table below lists the 2011 recommendations with a column showing if the recommendation has been implemented (Y), partially implemented or seen some activity (P), or not implemented (N) to date. The table also shows several new recommendations for 2014. A fuller discussion of the recommendations and activity to date follows.

2011 Recommended Policy Actions Implementation Progress

1. Promote a robust community aging services network to include senior N centers, senior nutrition and home-delivered meals programs, and wellness programs through adequate population-based funding

2. Expand services under the state co-pay home and community services P program to allow more hours of service and additional benefits such as medication management that can prevent or defer nursing home placement for persons with significant functional needs

3. Aggressively promote coordination of primary, acute and long term Y care

4. Provide public information and education about Long Term Care P Insurance 5. Explore offering group long term care insurance policies to public N employees

6. Promote the state’s Aging, Disability Resource Center (ADRC) through N a multi-media public information program

7. Implement a Web-based, real-time, interactive LTSS information and N resource site

8. Implement a streamlined fully functional ADRC single entry point P system for LTSS

9. Fully implement Long Term Care Options Counseling law Y

10. Review Expedited Eligibility for accessing Medicaid home and P community services

11. Expand access to Medicaid-funded assisted living through payment and P regulatory reform

12. Adopt regulations to create Adult Supportive Care Homes N

13. Develop assistive/supportive Housing programs for elders and adults N with disabilities

14. Develop and track a metric showing use of home and community N services prior to institutionalization

15. Review adequacy of Monthly Maintenance Allowance and asset P requirements to meet living expenses of persons using Medicaid home and community services

16. Strengthen Family Caregiver Support Services by ● Conducting a needs assessment for respite services and caregiver N support programs. ● Including Caregiver Assessments as part of the assessment for Y LTSS programs ● Strengthening the state Family/Medical Leave law N ● Enacting a Temporary Caregiver Insurance Leave Law Y New Recommended Policy Actions

 Appropriate state general funds to maintain a robust ADRC that includes an internet-based resource capacity and to conduct ongoing public media and outreach activities.  Develop a robust on-line benefits screening tool to assist elders in accessing income-assistance benefits and conduct ongoing outreach programs to increase participation.  Review the state Nurse Practice Act with the goal of allowing for nurse delegation of certain health maintenance and nursing tasks to be performed by direct care workers such as certified home health aides.  Require hospitals to provide family caregiver education and instruction regarding nursing care needs when patient is being discharged.  Explore use of emerging technologies to better serve HCBS clients

DISCUSSION OF 2011 POLICY RECOMMENDATIONS AND ACTION TO DATE

RECOMMENDATION 1: Promote a robust community aging services network to include senior centers, senior nutrition and home-delivered meals programs, and wellness programs through adequate population-based funding

Discussion: As shown in the chart below, private pay LTSS are costly. The $35,510 median annual income for RI households headed by persons age 65 and over would only cover the least costly type of care, adult day services. However, the $17,160 annual cost consumes almost half of elder household income leaving inadequate resources to cover all other living expenses.

RI Long Term Costs vs. Median Annual 65+ Household Income

$100,000

$90,000 Nursing Home $80,000 semi-private, $91,250 $70,000 Assisted Living, $58,740 $60,000 Home Health Aide $50,000 $41,184 $40,000

$30,000 Adult Day, $17,160 $20,000 $35,510 annual median income 65+ $10,000

Source. Genworth LTC Cost Across the US. https://www.genworth.com/corporate/about- genworth/industry-expertise/cost-of-care.html. accessed 11/21/14. Note: Home health aide costs were calculated at 30hrs. week for 52 weeks. Note: 2012 Consumer spending for 65+ consumer units was $40,410. (http://www.bls.gov/cex/csxann12.pdf)

The high cost of private pay LTSS in RI points out the importance of delaying the need for LTSS through preventive health services, nutrition and exercise programs and improved management of chronic diseases that lead to disability and functional dependencies. State investments in non- Medicaid funded support services provided by the state’s aging network (including senior center services, nutrition programs, wellness programs and disease self management) can help older persons remain healthier and living at home longer. For example, research findings show investments in home-delivered meals can defer the need for higher cost Medicaid-funded nursing home care.7 Nutrition programs are important as an estimated 16.8% of older Rhode Islanders are marginally food insecure and 25% are obese.8 With 37% of older Rhode Islanders having four or more chronic diseases, prevention and disease management programs offered by community aging agencies are critical. Community aging agencies can play a vital role in promoting healthy aging and decreasing the social isolation experienced by many elders thus lessening the need for costly LTSS. However, RI ranks number 44 (with one being the highest) in Administration on Aging funds captured per person living in poverty.9 State funds had traditionally supplemented federal funds available for community aging services. Yet, despite a growing older population, federal funds have remained flat and state funding for community aging services decreased by 68% since FY2006.10 At the same time, funding for Medicaid LTSS in RI increased by about 30% (from $333 million to $433 for all funds) from FY2006 to FY2013.11 And despite evidence showing that home-delivered meals programs can defer entry to nursing homes and respite services can help caregivers keep loved ones at home, waiting lists for these low-cost programs exist.

Action to Date: 1) Legislation was introduced in 2013 and 2014 to create population-based senior center funding and partially restore past funding cuts for these programs.12 Legislation Failed to pass 2) 2014 legislation to restore funding for Meals on Wheels and respite services to FY2006 levels was introduced. The legislation with funding failed to pass. However, the legislation was amended to require development of a state “Aging in Community” strategic plan under the auspices of the state Long Term Care Coordinating Council.13

RECOMMENDATION 2: Expand services under the state co-pay home and community services program to allow more hours of service and additional benefits such as medication management that can prevent or defer nursing home placement for persons with significant functional needs.

Discussion: The home and community care co-pay program serves low-income, homebound elders in need of assistance with activities of daily living who are not eligible for Medicaid. It offers case management and up to 20 hours/week of homemaker/home health aide service and up to 5 days of adult day service or a combination of these services. Clients pay a portion of the fee based on a two-tier income-based sliding scale. It has proven to be an efficient and effective program for keeping persons living at home. In fiscal year 2014, 1,627 persons were served in the program.14

Action to Date: In 2009 as part of the RI Global Consumer Choice Compact Medicaid Waiver, the co-pay program became eligible to receive federal matching funds under the CNOM (Costs Not Otherwise Matchable) provision. This helped maintain the program which, due to budget issues and its prior reliance on state only funds, was targeted for reductions in past years. The 2014 renewal of the Global Waiver (now referred to as the 1115 waiver) authorized the program to be expanded in two ways: increasing the upper income limit from 200% to 250% of the federal poverty level and allowing persons under age 65 with dementia to participate. Regulations are currently being adopted to implement these provisions. However, service hours and adult day services remain capped and no additional services such as medication management have been added.

RECOMMENDATION 3: Aggressively promote coordination of primary, acute and long term care

Discussion: Research is showing that improved coordination of primary, acute and LTSS can lead to better care outcomes including improved care coordination and reduced use of institutional services.

Action to Date: For the approximately 30,000 persons in RI with both Medicare and Medicaid (referred to as duals), the state is implementing a federal Financial Alignment Demonstration authorized under the Affordable Care Act. Named the Integrated Care Initiative (ICI), the demonstration offers four program options to enrollees: Rhody Health Options (RHO), Connect Care Community Choice Partners (CCCCP), PACE and traditional fee-for- service. RHO has the largest enrollment and is being implemented in two phases. Phase 1 started in November of 2013 with phased in enrollment. It provides for a voluntary Medicaid Managed program for LTSS that is offered through Neighbor Health Plan of RI (NHPRI). Care managers are assigned to those in nursing homes, in HCBS, and those determined to be at risk of needing LTSS. The expectation is that cost savings will be achieved from a combination of care management and best practice interventions. Although in Phase 1 acute care services are still paid by Medicare, the care manager can coordinate those and other services. Phase 2, scheduled to start in April 2015, will provide for a voluntary fully integrated Medicare and Medicaid plan. As of November 1st, 22,435 persons were enrolled in the ICI program: 17,363 in RHO, slightly less then projected; 4,936 in CCCCP which is operated by CARELINK and provides for enhanced case management and use of a community health team; and 309 in PACE (Program of All Inclusive Care of the Elderly), a pre-existing managed, integrated care program for duals needing LTSS. The initial RHO contract with NHPRI projected per member/per month savings of 10.8% from transition/migration interventions placing persons in more appropriate settings and services and 1.6% from care management. It is too early to evaluate results to determine if savings projections are being achieved.15

RECOMMENDATIONS 4 AND 5:  Provide public information and education about Long Term Care Insurance  Explore offering group long term care insurance policies to public employees.

Discussion: With 40 Long Term Care insurance policies in effect per 1,000 persons age 40 and over (2011), RI ranked #30 for this measure showing no performance change from the 2011 Scorecard. The state continues to be the only New England state ranking below the 2nd quartile in this area. Long term care insurance can be costly and premium costs vary tremendously based on policy benefits selected. The average 2012 premium for a single person age 55 was $2,007; for same age couples, $2,466. About half of persons with LTC policies buy them between ages 55- 64.16 Premium costs rise significantly when purchasing at age 65 and over and may not be available for persons with certain pre-existing conditions. It is generally advised that LTC insurance not be bought if paying premiums would be a hardship and such policies may be unaffordable for many Rhode Islanders. Median income in RI households of persons between ages 45 and 64 is almost twice that of households of persons age 65 and over ($71,335 vs. $36,586)17. More should be done to encourage those in the middle years when income tends to be higher and costs for LTC insurance lower to plan ahead to provide for potential long term care needs.

In the early 1990’s the state included the purchase of group long term care insurance as an option available to its employees. Premiums were not subsidized by the state and due to poor uptake, the program was discontinued. The state should review reinstating this option for its employees.

Action to Date on Recommendation 4: The RI Division of Elderly Affairs website main menu has a listing, “Long Term Care Website” that links to the federal Administration on Aging Long Term Care website (http://longtermcare.gov/) that has excellent consumer information about paying for long term care, long term care insurance, and cost of care by state using the Genworth long term care 2013 study.18 The RI Department of Business Regulation provides some information about long term care insurance under its “Consumer” menu. Although it is not easy to find, there is a link to “InsureUonline.org” that discusses Insurance Considerations for Seniors and Boomers.19 However, some of the information is outdated. For example, a Special Section on long term care insurance refers to 2001 average long term care costs.

Action to date on Recommendation 5: None noted

RECOMMENDATIONS 6, 7, 8, AND 9:  Promote the state’s Aging, Disability Resource Center (ADRC) through a multi-media public information program  Implement a Web-based, real-time, interactive LTSS information and resource site  Implement a streamlined fully functional ADRC single entry point system for LTSS  Fully implement Long Term Care Options Counseling law

Discussion: Administered by the Division of Elderly Affairs, the RI ADRC (referred to as the POINT), began operations in 2005 with federal funding and has evolved into a network of state and local organizations who act as partners. The ADRC/POINT is a statewide central service that provides information about aging services and long term care options, basic benefits screening, referrals to services and assistance with applications. Persons of all ages and disabilities and those paying privately are served without any means testing. THE POINT is operated under contract with the United Way. In addition, to the central POINT, there are formal agreements with six (6) regional “POINT” partners situated at non-profit organizations throughout the state that provide support to the central POINT. Four of the regional Points are located within agencies that provide Case Management services to clients receiving home and community care through the Division of Elderly Affairs. The regional Point agencies also partner with other local community agencies to complete the statewide system. The POINT does not maintain a functioning website. The state Division of Elderly Affairs has an internet site that provides some information about aging and long term care services. However, the site is not kept up to date in all areas and navigating it is not user friendly. Federal funding specific to ADRC functions have ended and the state is using general Older Americans Act Title III support services funds to maintain THE POINT. To date, no state general funds have been appropriated to sustain ADRC services once the federal funding ended.

Action to Date: Since publication of the 2011 LTC Scorecard the state improved its scores in ADRC functions achieving a rank of #10 (1st quartile) in 2014. However, it has not created an interactive web-based LTSS information and resource internet site as an ARDC/POINT service. Nor has it initiated a multi-media public information campaign. A two-year federal supplemental grant from the federal Money Follows the Person program allowed the Division of Elderly Affairs to standardize the options counseling process and to provide Options Counseling training for its Point program and partner agencies in 2014 as a way of complying with the statutory mandate and requirement in the 1115 waiver to provide options counseling.

The state has been putting information on LTSS onto the Executive Office of Health and Human Services website (http://www.eohhs.ri.gov/). Several other state websites also offer information about LTSS on their websites; however, the information from the sites does not always seem to be coordinated and consumers may be confused about the accuracy or timeliness of the information. RITE RESOURCES, a program that uses information voluntarily submitted by providers to populate its resource listings was a promising resource intended to provide information on the availability and features of individual LTSS providers.20 However, when recently checked (December 2014) a majority of providers were not listed in the resource database limiting its usefulness to care managers, consumers and family caregivers. As part of its effort to support caregivers and with support from advocates, the state has produced a Guide for Caregivers Booklet which is available online.21

The state recently received a $225,000 one-year planning grant to create a “No Wrong Door” system of access for all LTSS for all populations and players. The state will hire a consultant to manage the project and create a Stakeholder group to provide input for development of a 3-year implementation plan.

NEW RECOMMENDATIONS FOR POLICY ACTIONS:

 The Governor and General Assembly should appropriate state general funds to maintain a robust ADRC that includes an internet-based resource capacity and to conduct ongoing public media and outreach activities. As federal funds for the ADRC have ended it is crucial to maintain and strengthen this service for persons and families needing information about aging and LTSS.

 The state should develop a robust on-line benefits screening tool to assist elders in accessing these benefits and conduct ongoing outreach programs to increase participation. Several public benefits programs are available that help address elders’ economic insecurity and potentially avoid or defer Medicaid enrollment as elders would have more private resources to help pay for needed home and support services. These programs are especially important in RI as 34% of elders are living below 200% of the federal poverty level.22 The Low Income Subsidy program for Medicare Part D helps with prescription drug costs, the SNAP program (formerly Food Stamps) helps pay for food and the Medicare Premium Assistance program helps pay for co- payments and/or Part B premiums. Many cities and towns offer elder homeowners some property tax relief and the state has a circuit breaker program to offset property taxes for low income persons. These programs could save elders several thousand dollars a year by offsetting food, health insurance and health care costs; yet many elders are unaware of them. The state does have a Benefits Screener on its website.23 However, the screening is limited to SNAP and Medicaid and the information on SNAP eligibility regarding resources for older persons can be confusing.

RECOMMENDATION 10: Review Expedited Eligibility for accessing Medicaid home and community services.

Discussion: The average ‘Turn Around Time’ for processing Medicaid financial eligibility for LTC was 53.55 days in the 2nd quarter of FY2014.24 Many persons enter nursing homes under Medicare for skilled care/rehab following acute hospitalization and can apply for Medicaid while in the nursing home if it appears they will need a longer stay than allowed under Medicare. Social workers at nursing homes are usually available to help with the process. Families wanting to keep elders and adults with disabilities at home usually have different circumstances. They want to keep loved ones out of acute and institutional settings. However, with average ‘Turn Around Times’ for Medicaid financial applications well in excess of 30 days, they can not always wait until needed home care services can be put in place and may resort to nursing home placement. Speeding up the eligibility process or allowing for expedited eligibility using self attestation will allow access to services which may avoid premature nursing home placement for some.

Action to Date: Expedited financial eligibility through self-attestation for home and community-based services for up to 90 days for up to 20 hours weekly of personal care/homemaker services and/or a maximum of three days of adult day service and/or limited skilled nursing services was included in the state 1115 Waiver renewal (1115 Waiver, Part V. Eligibility and Enrollment STC #28). Clinical eligibility must first be approved.

This provision has yet to be implemented. RECOMMENDATION 11: Expand access to Medicaid-funded assisted living through payment and regulatory reform

Discussion:. To achieve the state’s long term care system balancing goal for LTSS for elders and adults with disabilities, it must take more aggressive action to increase access to less restrictive and more affordable residential alternatives to nursing homes for persons not needing 24-hour skilled care or extensive assistance with daily living activities. Additionally, it must explore some of the new initiatives and innovations for Housing with Support Services and shared community living. Assisted living can offer a less restrictive alternative to nursing homes. The top performing states tend to have far higher ratios of assisted living units per 1,000 population than RI which had 25 units per 1,000 persons age 65+ in the 2014 Scorecard report. Minnesota had five times as many units and Oregon, Washington and Wisconsin all had twice as many. RI currently has 62 assisted living residences (ALR) with 4,337 licensed units.25 This would update the Scorecard ratio to 28 units per 1,000 persons age 65+, still below the national average of 31. Only about 29 of the state’s AL residences participate in the Medicaid program.26 Three of them account for about 151 of residents funded by Medicaid. Testimony from the EOHHS for the November 2014 Caseload Estimating Conference forecast 588 persons using Medicaid assisted living in FY2015 and reported the state Medicaid program spent 49 times as much money on nursing homes as it did for assisted living in FY 2014 ($271 million vs. $5.5million). The most recent online Medicaid Waiver report to the state senate shows the average per person/month cost in the 2nd quarter of SFY 2014 for assisted living at $1,160 vs. $4,994 for nursing home care.27

Increasing use of assisted living for persons on Medicaid will require addressing both state licensing regulations and reimbursement policy. In RI, state licensing laws had limited the amount and type of nursing services that can be offered in assisted living and do not allow licensed nurses to practice to their full scope of legal authority. Federal regulations under the Money Follows the Person (MFP) program intended to promote transitions of persons out of nursing homes are an additional deterrent as an assisted living residence must meet certain criteria to qualify under MFP. In RI, only 18 of the 62 licensed assisted living residences meet the MFP criteria.28

Another factor limiting use of assisted living for low income persons in RI is the reimbursement rates paid under Medicaid and the limited number of Assisted Living Residences that participate in Medicaid. An assisted living residence is currently paid a $42.16 per diem flat rate by Medicaid for assisted living services. A room and board payment from the resident’s own resources of $700 or $1132 is required as federal law does not allow Medicaid to pay for room and board in assisted living. Very low income persons may not have sufficient resources to pay for the room and board costs and the low allowable room and board payment may deter some providers from being a Medicaid assisted living provider. A consultant study, Medicaid Assisted Living in Rhode Island, Evaluation of Payment Methods (June 2011) prepared for the Department of Human Services, outlines options for alternative payment methods and financial incentives for increasing access.29 Action to Date: No alternative payment methods have been adopted for assisted living. However, under the state’s Integrated Care Initiative (ICI), Neighborhood Health Plan of RI (NHPRI) which is managing one of the ICI options is providing a slightly higher reimbursement of $46/day.30 Neither the state nor NHPRI provides any acuity-based payment for those in dementia units nor participants who need a higher level of assistance with activities of daily living. Few, if any, assisted living providers with dementia level of care units accept Medicaid participants in their dementia special care units. As the state moves to implement the new “limited health services” level discussed below, it needs to offer adequate reimbursement to care for Medicaid enrollees needing such services.

Legislation passed in 2013 provides for a new “limited health services” level of assisted living.31 “Limited health services” are defined as being ordered by a physician to be provided in assisted living residences as defined in rules and regulations. In October 2014 the RI Health Department presented a proposed draft of new regulations for Community Review. The draft would allow the following limited health services: (a) Stage I and stage II pressure ulcer treatment and prevention; (b) Simple wound care including postoperative suture care/removal and stasis ulcer care; © Ostomy care including appliance changes for residents with established stomas; (d) Urinary catheter care; (e) Coordination of hospice services for residents who are bed-bound or in need of assistance from more than one staff person for ambulation.

The Health Department is reviewing comments made at the Community Review in preparation for a formal public hearing. The RI Assisted Living Association requested that the new regulations expand the definition of “personal care” to include certain routine nursing tasks including vital signs, pulse oximetery and glucose monitoring.32 The Health Department will review comments made at the community review, make changes in response and hold a public hearing prior to final adoption.

RECOMMENDATION 12: Adopt regulations to create Adult Supportive Care Homes

Discussion: In an attempt to expand non-institutional residential options for elders and older adults with disabilities, legislation enacted in 2009 authorized creation of adult supportive care homes that would serve from two to five persons and provide meals, laundry, personal care and recreation.33

Action to Date: The state has not developed regulations to allow this model to be implemented. RECOMMNENDATION 13: Develop assistive/supportive Housing programs for elders and adults with disabilities

Discussion: Surveys consistently show that elders want to remain in their own homes as long as possible whether it is a single family home, an apartment or a subsidized apartment complex for the elderly and persons with disabilities. Across the country, housing programs with support services, support communities without walls such as the “Village” programs, and assisted living services not tied to real estate are being developed and are seen as important for the future of aging services. As part of its strategy to enhance opportunities for persons to live at home when they have support and long term care needs, the state should explore implementing Housing with Supportive Services demonstration models. One model could have an “assisted services” provider offer a cafeteria-style package or bundle of coordinated supportive services in accordance with changing need. Another could emulate Vermont’s Support and Services at Home (SASH) program which serves 3,861 Vermonters at 118 housing sites. SASH employs a team comprised of various local service providers anchored by a SASH coordinator and a wellness nurse who work closely with residents at elderly housing sites to monitor residents’ well-being and changing needs and to ensure they get the services they need. SASH housing sites also serve as SASH hubs for seniors living in nearby neighborhoods. SASH receives funds from federal Medicare and the state Medicaid program and is viewed as a best practice. An independent evaluation of SASH documented annual savings to the Medicare program of $1,756 per person in acute and post-acute care spending.34 The RI Housing Consolidated Plan (2010- 2015) shows there were 19,405 low and moderate housing units for elderly and persons with disabilities in the state in 2008. Most of these units are in subsidized apartment complexes. Bringing a SASH-type program into these complexes would be an effective tool in assisting frail elders to remain living at home. The state should also encourage local communities to work with their senior centers and volunteer programs to explore creating “Village-type” programs to meet elders support needs.35

Action to Date: The state has not pursued any housing with support services demonstrations. A few attempts by volunteers to start Village-type programs had been started but had limited response. Most recently one in Providence, The Providence Village, is underway.

RECOMMENDATION 14: Develop and track a metric showing use of home and community services prior to institutionalization

Discussion: The Scorecard looked at data reviewing whether persons admitted to nursing home under Medicaid had received Medicaid home/community waiver services, personal care or home health care prior to nursing home admission. This is important as once a person is admitted to a nursing home it is difficult for them to return to community living. Family caregivers may not have been receiving needed support such as respite that would help keep care recipients in the community. Once a person is admitted to a nursing home, apartments may be given up or homes and furnishings sold. Using home and community services combined with good care management and family support as a first option can sometimes avoid premature nursing home placement. The 2014 Scorecard showed RI at 37.6%, essentially the same as the 2011 Scorecard and significantly below the U.S. mean of 53.6%.

Action to Date: A comparable metric has not been developed

RECOMMENDATION 15: Review adequacy of Monthly Maintenance Allowance and asset requirements to meet living expenses of persons using Medicaid home and community services.

Discussion: Persons on Medicaid have limited income and resources. Those receiving in-home personal care/homemaker services are allowed to keep a monthly maintenance allowance, referred to as a Personal Needs Allowance (PNA), to meet living expenses. The current PNA is $992.50. Expenses paid for health insurance and allowable costs for medical care not covered by Medicaid are deducted from a person’s income with the result determining what the person may keep for living expenses and what amount would go toward the client share for services. A spousal allowance is also allowed and deducted if the person is married. The personal needs allowance may not be adequate to meet living expenses particularly for a single person not living in government-subsidized housing unit. For example, RI Housing’s annual rent survey found average rent for a one-bedroom apartment in 2013 was $900 (this includes a utility cost allowance).36 Without a housing subsidy, after paying rent of $900, a single person would only have $92.50 left for all other expenses such as food, household supplies, transportation and other expenses as income beyond that would have to go toward the client cost share. Although SNAP benefits can help with food costs, without further resource assistance, many persons will find it unaffordable to transition out of nursing homes or to remain in a community living situation and pay their share of home care expenses as required by Medicaid.

Action to Date: The state 1115 Waiver renewal (STC # 68) provides for an increase in the monthly PNA by $400 for certain persons who have resided in a nursing home for 90 consecutive days and are transitioning to a community residence and are determined to be unable to afford to remain in the community unless the PNA is increased.

To date this provision has not been implemented.

Recognizing persons transitioning from nursing homes to community living would usually lack resources to set up an apartment, the state 1115 Medicaid waiver allows for transitional services. In July 2013 the state instituted a one-time transition allotment of up to $1,400 to provide funds to persons on Medicaid for one-time set up expenses related to transitions from nursing homes to community living. These funds can be used for home appliances/furnishings, rent deposits and similar set up costs.

RECOMMENDATION 16: Strengthen Family Caregiver Support Services by

● Conducting a needs assessment for respite services and caregiver support programs. Action to Date: Needs assessment not done

● Including Caregiver Assessments as part of the assessment for LTSS programs

Action to Date: In 2013 the General Assembly enacted legislation to require that a caregiver assessment be conducted when a person on Medicaid-funded HCBS had a caregiver providing personal care.37 A caregiver assessment tool was developed with consumer- advocate input and has been implemented across the system.

● Strengthening the state Family/Medical Leave law

Action to Date: None noted

● Enacting a Temporary Caregiver Insurance Leave Law

Action to Date: In 2013 the general assembly enacted legislation to create a paid Temporary Caregiver Insurance law as a complement to its Temporary Disability law.38 The law allows up to four weeks of wage replacement for purposes for caring for a seriously ill immediate family member, parent in-law, grandparent or domestic partner or to bond with a newborn or newly adopted or foster child. The program is supported through the TDI tax paid for by employees. The law became operative in January of 2014. As of the beginning of December, 2007 persons have taken advantage of the new law.

NEW RECOMMENDATION: Require hospitals to provide family caregiver education and instruction regarding nursing care needs when patient is being discharged.

Discussion: Family members are often called on to perform complicated, skilled tasks such as dressing and catheter changes and medication injections when a person is discharged from an acute care setting. Such tasks are usually performed by licensed nursing personnel in hospitals or other medical settings and family members may be overwhelmed with preparing for and learning these new skills especially when there has been little advance notice of discharge and family members have not been involved in discharge planning. For many family members being called on to become caregivers, even learning the proper way to transfer someone from a bed to wheelchair can be a challenge. Hospitals and rehabilitation facilities should be required to record the name and contact information for key family caregiver/s prior to discharge and provide live demonstrations and training on any medical-type tasks a family caregiver will be required to perform upon discharge.

NEW RECOMMENDATION: The state should convene a Stakeholder group to review the state Nurse Practice Act and Health Department Rules and Regulations regarding nurse delegation and Regulations for Certificates of Registration of Nursing Assistants with the goal of developing consensus for expanding nurse delegation of certain health maintenance tasks and for training of nursing assistants and assistive personnel to perform specific routine nursing tasks. 39

Discussion: Many family caregivers may not always available due to work schedules to administer a medication, apply eye drops, or perform other routine health/nursing tasks. They must either take time out of work or pay a licensed person at far greater cost to perform the task. Many states allow some nurse delegation to direct care staff. Some of the tasks more frequently allowed by nurse delegation include. Administer oral medications: 30 states; Conduct glucometer tests: 42 states Perform ostomy care including skin care and changing appliance: 41 states

Although RI statutory law does not address nurse delegation, the Rules and Regulations for the Licensing of Nurses and Standards for the Approval of Basic Nursing Education Programs do provide opportunity for delegating to nursing assistants and unlicensed assistive personnel under certain conditions. The Rules require that the client have a stable and predictable condition, an assessment be conducted by y a licensed nurse, and for the delegatee to be trained. Developmental Disabilities Organizations regulated under the Department of Behavioral Health, Developmental Disabilities and Hospitals do have specific rules for when nurse delegation is allowed by direct care staff including tasks that are never delegated.40 Examples of never allowed tasks include: nursing assessments, diagnosis and care planning; wound care involving complex sterile dressings; invasive procedures such as catheter insertions and irrigation; and injecting medications requiring dose calculations.

NEW RECOMMENDATION: Explore incorporating new technologies that help manage chronic conditions and improve safety of persons in home and community-based care and long term care settings into the Medicaid LTSS benefit package.

Discussion: Many new technologies that go beyond typical Personal Emergency Response systems are available to enhance the care of persons with chronic conditions and to promote the safety of persons living at home and in nursing facilities. Examples include: telehealth programs, medication alerts and dispensing systems, video/audio monitoring cameras and systems and fall detection devices. NOTES

1 AARP, The Commonwealth Fund, the Services and Supports FFY2012”, Rhode SCAN Foundation, Raising Expectations, A .Island Table 40 State Scorecard on Long-Term Services and Supports for Older Adults, People with 7 Brown University, News from Brown. Physical Disabilities, and Family Available at Caregivers, 2nd edition”. Indicator is based https://news.brown.edu/articles/2013/10/ on number of Medicaid participant years per meals. accessed 12.4.14. 100 adults age 21+ with activities of daily living disability in nursing homes or 8 United Health Foundation, “Americas at/below 250% of the poverty level in the Senior Health Rankings”. Data on food community. RI went from 39.1 participants insecurity, obesity, chronic diseases, social in 2007 to 46.9 such participants in 2009. isolation and funding from Administration on Aging available at 2 CMS, Truven Health Analytics (April 28, www.americashealthrankings.org/senior. 2014), “Medicaid Expenditures for Long accessed 11/20/14. Term Services and Supports FFY2012”. Available at: 9 Ibid www.medicaid.gov/medicaid-chip- program-information/by-topics/long- 10 Information provided by Division of Elderly term-services-and- Affairs staff. supports/downloads/ltss-expenditures- 2012.pdf. accessed 12.3.14. 11 Data for FY2006 found on NASUAD website available at 3 Brown School of Public Health, LTC Focus. http://nasuad.org/sites/nasuad/files/hcbs/f Available at: .iles/120/5962/2006StateExpenditures.pdf http://ltcfocus.org/map/45/percent-low- Data for FY2014 found on RI general care- assembly website available at prevalence#2010/RI/col=2&dir=asc&pg= http://webserver.rilin.state.ri.us/housefinanc 4&lat=41.68932225997047&lng=- e/ba/2014/FY%202015%20BAE 71.54296875&zoom=9&leg=open, %20Section%20III%20Agency accessed 11/20/14 and email from Vincent .%20Analyses Mor to Maureen Maigret dated 11/20/14.

4 Ibid 12 Search for H7236 and S2194 on on RI General 5 CMS, Outcome and Assessment Assembly website (bill text) at: Information Set (OASIS). Available at: http://webserver.rilin.state.ri.us/BillText14/ http://www.cms.gov/Medicare/Quality- Initiatives-Patient-Assessment- 13 Search for H7361SubA and S2215SubA on Instruments/OASIS/09aa_hhareports.ht RI General ml. accessed 1.15.15. Assembly website (bill text) at: http://webserver.rilin.state.ri.us/BillText14/ 6 Medicaid Expenditures for Long Term “ 14 Email from Paula Parker (Division of 23 Find at: Elderly Affairs) to Maureen Maigret dated https://www.screening.dhs.ri.gov/English/h 12/9/14. .ome.cfm

15 State of Rhode Island Agreement #NHPRI 24 Report to the Rhode Island General RHO 14/16-001 Attachment I, page 195. Assembly Senate Committee on Health and Human Services, June 30, 2014, available at 16 The American Association forLong Term www.eohhs.ri.gov/Portals/0/Uploads/Doc Care Insurance. Available at uments/EOHHS%20Report%20to www.aaltci.org/long-term-care- %20the%20RI%20State%20Senate insurance-rates/ accessed. 12.2.2014. %2007032014.pdf

17 US Census. 2011-2013 American 25 Email from Kathleen Kelly to Maureen Community Survey 3-Year Estimates. Maigret dated 12.2.14. Table 19049 MEDIAN HOUSEHOLD INCOME IN THE PAST 12 MONTHS (IN 26 Ibid 2013 INFLATION-ADJUSTED DOLLARS) BY AGE OF 27 Report to the Rhode Island General HOUSEHOLDER Assembly Senate Committee on Health and Universe: Households available at Human Services, June 30, 2014. http://factfinder2.census.gov/faces/tablese rvices/jsf/pages/productview.xhtml? 28 Email from Kathleen Kelly to Maureen pid=ACS_13_3YR_B19049&prodType=t Maigret dated 12/1/14. able. Accessed Dec. 2 2014. 29 ACS, “Medicaid Assisted Living in Rhode 18 Find at: http://www.dea.ri.gov/ Island, Evaluation of Payment Methods”, June 2011. Available at: 19 Find at: http://www.eohhs.ri.gov/Portals/0/Upload http://www.insureuonline.org/insureu_speci s/Documents/Medicaid_Assisted_Living_ al_longtermcare.htm June_2011.pdf. accessed 12/4/14.

20 Find at: 30 Email from Kathleen Kelly to Maureen https://www.ricsm.net/RIteResources/ Maigret dated 11/26/14.

21 Available at: 31 Public Laws 13-294 and 13-379 found on http://www.eohhs.ri.gov/Portals/0/Upload General Assembly website at: s/Documents/RI%20OHHS%20 http://webserver.rilin.state.ri.us/Lawrevision CaregiverGuide.pdf. /laws2014.htm.

22 US Census. Current Population Suvey. CPS 32 Email from Kathleen Kelly to Maureen 2013 Table: Pov46.Poverty Status by State Maigret dated 11/24/14. available at www.census.gov/hhes/www/cpstables/032 33 RI General Law 23-17.24 accessed at: 014/pov/pov46_001_150175.htm. http://webserver.rilin.state.ri.us/Statutes/TIT Accessed Nov. 4, 2014. LE23/23-17.24/INDEX.HTM. 34 RTI, “SASH Evaluation Summary” of knowledge, skills, training, experience, available at and cultural awareness of the unlicensed http://gmcboard.vermont.gov/sites/gmcboar assistive personnel when the client’s health d/files/Meetings/Presentations/RTI_SASH_ status is stable and predictable, as defined in Summary_100214.pdf. accessed 12.4.14. these Regulations. 35 For a discussion of the Village model, go to: http://www.vtvnetwork.org/ 40 Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, 36 Rhode Island Housing Rent Survey, Year “Rules and Regulations for the Licensing of End 2013 vs. Year End 2012, available at Developmental Disabilities Organizations”. www.rhodeislandhousing.org/filelibrary/ Available at: Rent%20Survey%202013%20Final.pdf. http://sos.ri.gov/documents/archives/regd Accessed 12.3.14. ocs/released/pdf/MHRH/7826.pdf)

37 RI Public Laws 13-457 and 13-469 found on General Assembly website at: http://webserver.rilin.state.ri.us/Lawrevision /laws2013.htm

38 RI Public Laws 13-187 and 13-213 found on General Assembly website at: http://webserver.rilin.state.ri.us/Lawrevision /laws2013.htm

39 Rules and Regulations for the Licensing of Nurses and Standards for the Approval of Basic Nursing Education Programs. Available at: http://sos.ri.gov/documents/archives/regdoc s/released/pdf/DOH/7873.pdf Definitions 1.48 “Stable and predictable” means a condition in which a client’s clinical and behavioral status, as assessed by the registered nurse, is determined to be non- fluctuating and consistent,is not recuperative in nature,and does not require the regularly scheduled care of a registered or licensed practical nurse. Section 11.0 Standards of Nursing Practice Delegation 11.1 Nurses may delegate to nursing assistants who are registered or licensed with the Department. (a) In addition, nurses may delegate nursing activities that are consistent with the level Appendix A Rhode Island: 2014 State Long-Term Services and Supports Scorecard Dimension and Indicator Data Baseline Current All States Top Dimension and Indicator (Current Data Year) Rank State OVERALL RANK Change 38 Affordability and Access 36 Median annual nursing home private pay cost as a percentage of median household income age 65+ 350% 352% 48 1 234% 168% Median annual home care private pay cost as a percentage of median household income age 65+ (2013) 125% 111% 51  84% 47% Private long-term care insurance policies in effect per 1,000 population age 40+ (2011) 38 40 30 1 44 130 Percent of adults age 21+ with ADL disability at or below 250% of poverty receiving Medicaid or other government 56.8% 55.3% 15 1 51.4% 78.1% Medicaid LTSS participant years per 100 adults age 21+ with ADL disability in nursing homes or at/below 250% 39.1 46.9 18  42.3 85.2 ADRC functions (composite indicator, scale 0-70) (2012) ** 60 10  54 67 Choice of Setting and Provider 38 Percent of Medicaid and state LTSS spending going to HCBS for older people & adults w/ physical 14.4% 16.3% 50  31.4% 65.4% Percent of new Medicaid aged/disabled LTSS users first receiving services in the community (2009) 36.5% 37.6% 34 1 50.7% 81.9% Number of people participant-directing services per 1,000 adults age 18+ with disabilities (2013) * 16.2 17 8.8 127.3 Home health and personal care aides per 1,000 population age 65+ (2010-12) 20 30 31  33 76 Assisted living and residential care units per 1,000 population age 65+ (2012-13) 25 25 28 1 27 125 Quality of Life and Quality of Care 31 Percent of adults age 18+ with disabilities in the community usually or always getting needed support 64.4% 72.7% 24  71.8% 79.1% Percent of adults age 18+ with disabilities in the community satisfied or very satisfied with life (2010) 80.2% 84.9% 40  86.7% 92.1% Rate of employment for adults with ADL disability ages 18–64 relative to rate of employment for adults without ADL 32.6% 13.8% 51  23.4% 37.2% Percent of high-risk nursing home residents with pressure sores (2013) * 5.7% 21 5.9% 3.0% Nursing home staffing turnover: ratio of employee terminations to the average number of active 29.9% 36.4% 18  38.1% 15.4% Percent of long-stay nursing home residents who are receiving an antipsychotic medication (2013) * 19.4% 20 20.2% 11.9% Support for Family Caregivers 19 Legal and system supports for family caregivers (composite indicator, scale 0-14.5) (2012-13) ** 6.00 7  3.00 8.00 Number of health maintenance tasks able to be delegated to LTSS workers (out of 16 tasks) (2013) 0 0 47 1 9.5 16 Family caregivers without much worry or stress, with enough time, well-rested (2011-12) 62.6% 64.8% 3 1 61.6% 72.8% Effective Transitions 31 Percent of nursing home residents with low care needs (2010) 17.7% 18.0% 43 1 11.7% 1.1% Percent of home health patients with a hospital admission (2012) * 25.7% 28 25.5% 18.9% Percent of long-stay nursing home residents hospitalized within a six-month period (2010) 11.6% 11.5% 3 18.9% 7.3% Percent of nursing home residents with moderate to severe dementia with one or more potentially 1 burdensome * 18.8% 20 20.3% 7.1% Percent of new nursing home stays lasting 100 days or more (2009) * 21.3%* 33 19.8% 10.3% Percent of people with 90+ day nursing home stays successfully transitioning back to the community * 6.8% 36 7.9% 15.8% * Comparable data not available for baseline and/or current year. Change in performance cannot be calculated without baseline and current data.

Page | 34 Key for Change: ** Composite measure. Baseline rate is not shown as some components of the measure are only available for the current year. Change in performance is based only on those components with comparable prior data. See page 73 and page 83 in Raising Expectations 2014: A State  Performance improvement Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers for more detail. Little or no change in Notes: ADL = Activities of Daily Living; ADRC = Aging and Disability Resource Center; HCBS = Home and Community Based Services; LTSS = 1 performance Long Term Services and Supports. Please refer to Appendix B2 on page 97 in the report for full indicator descriptions, data sources, and other notes about methodology; for  Performance decline baseline data years, please see Exhibit 2 on page 11. The full report is available at ww w . lo ng ter m s corec a r d. or g