Presentation on theme: "TEXAS’ “STATE-SUPPORTED LIVING CENTERS”: PAST, PRESENT, FUTURE David Braddock, Ph.D., Associate Vice President, University of Colorado Professor and Executive."— Presentation transcript:
4 ABILENE EPILEPTIC COLONY, ABILENE, TEXAS (1899) D. Braddock, University of Colorado, 2007.
5 AUSTIN STATE SCHOOL (1917) D. Braddock, University of Colorado, 2006.
6 NEW YORK STATE MENTAL RETARDATION INSTITUTION, CIRCA 1967 Source: Braddock, D., University of Colorado, 2008.
7 DECLINING NUMBER OF INSTITUTIONAL RESIDENTS WITH I/DD AND MENTAL ILLNESS IN THE U.S. (IN 1,000s)
8 II.TO COMMUNITY: KENNEDY &
9 TEXAS STATE PLAN (1966) Source: Braddock, D., University of Colorado, 2008.
10 Source: Braddock, D., State of the States in Developmental Disabilities, DECLINING I/DD STATE SCHOOL UTILIZATION RATES:
11 TEXAS GENERAL POPULATION INCREASES 125% FROM Source: U.S. Census Bureau (2011).
12 Structure and Financing of Intellectual/Developmental Disability (I/DD) Services II.1 TRENDS IN I/DD SERVICES IN TEXAS &THE U.S.
13 STATE-OPERATED I/DD INSTITUTIONS IN TX Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
14 LARGEST CENSUS STATES, PER CAPITA* *Per 100,000 of the state general population Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
15 INSTITUTIONAL PER DIEM RATES IN TEXAS AND THE U.S.: 2009 TEXAS: $317* LOUISIANA$539* NEW MEXICO$0* U.S.:$524 Highest State (New York):$1,237 Lowest State (Arkansas):$281 *Texas’ per diem ranked 3 rd lowest of the 40 states with institutions, Louisiana’s ranked 19 th highest. New Mexico closed it’s last institution (Los Lunas) in Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
16 STATES WITHOUT STATE-OPERATED I/DD INSTITUTIONS 1.DISTRICT OF COLUMBIA (1991) 2.NEW HAMPSHIRE (1991) 3.VERMONT (1993) 4.RHODE ISLAND (1994) 5.ALASKA (1997) 6.NEW MEXICO (1997) 7.WEST VIRGINIA (1998) 8.HAWAII (1999) 9.MAINE (1999) 10.MICHIGAN (2009) 11.OREGON (2009) 12.ALABAMA (2012) 13.MINNESOTA (2000)* 14.INDIANA (2007)* Source: Braddock, D., State of the States in Developmental Disabilities, *Denotes ICF/ID units in mental health institutions.
17 CUMULATIVE NUMBER OF COMPLETED/IN PROGRESS CLOSURES OF STATE-OPERATED 16+ INSTITUTIONS, U.S. Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
18 WHO’S NEXT? Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
19 WHO’S NOT? Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
20 Justice Department in 2008 found poor care and little protection from harm for Austin Center residents. Austin Center now out of compliance with 153 of 171 provisions that were outlined in a June 2009 agreement. Some improvements: increased staff pay, decreased staff turnover, and new policies to protect residents. However, half of the 350 Center residents have urgent dental needs, patient restraint records are incomplete, and there are continued employee problems. Between November 2010 and May 2011 twelve staff were fired for abuse or neglect of residents. Disability activists say the State must close state centers, move residents to community settings including group home. A. Ball, American-Statesman, Austin, August 7, U.S. DEPARTMENT OF JUSTICE REVIEWS TEXAS I/DD INSTITUTIONS
21 Utilization Rate: 194 per 100,000 INDIVIDUALS WITH I/DD IN OUT-OF-HOME PLACEMENTS IN THE U.S., 2009 Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
22 Utilization Rate: 182 per 100,000 (32 nd ) INDIVIDUALS WITH I/DD IN OUT-OF-HOME PLACEMENTS 33 YEARS LATER: 2009 Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
23 I/DD REVENUE SOURCES IN 2009: UNITED STATES Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
24 I/DD REVENUE SOURCES IN 2009: TEXAS Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
25 STATES VARY GREATLY IN THE AMOUNT OF I/DD MEDICAID FUNDING NY Times, August 2, 2011
26 UNITED STATES FEDERAL HCBS WAIVER SPENDING DOUBLES ICF/ID SPENDING IN 2009 Intercept (2001) Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
27 TEXAS BUT TEXAS’ WAIVER SPENDING IS STILL BELOW ICF/ID SPENDING Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
28 TEXAS Source: Braddock, D., State of the States in Developmental Disabilities, *Includes Home and Community- Based Services (HCS) and Community Living Assistance and Support Services (CLASS) Waivers. HCBS WAIVER PARTICIPANT GROWTH IS INCREASING IN TEXAS: *
29 Case management; transition assistance; Adaptive aids; minor home modifications; Medical supplies; nursing; Adult foster care; residential care and/or assistance; Personal Emergency Response System (PERS) OT, PT, Speech Pathology, Audiology; specialized therapies Personal assistance; Home delivered meals; dietary Respite care; Supported employment; day habilitation; Dental, psychological services. II.2: TEXAS HCBS WAIVER SERVICES
30 TEXAS HCBS WAIVER SERVICES (Cont.) AMONG THE HCBS WAIVER SERVICES NOT PROVIDED: Assistive technology Community integration training Transportation Independent living skills training. Communication devices Nutritional counseling Private duty nursing
31 Texas has two major HCBS Waivers for which persons with I/DD await services: 1.Home and Community Services (HCS) Waiver: 51,856 persons on “interest list” 2.Community Living Assistance and Support Services (CLASS) Waiver: 36,770 persons on “interest list” Source: Texas Department of Aging and Disability Services (DADS) interest list. *Duplicated Count. In March 2009, the HCS and CLASS “interest lists” were 41,011 and 25,289, respectively. TEXAS “INTEREST LIST” FOR MEDICAID WAIVER SERVICES AS OF MAY 2011*
32 TEXAS RANKED 49 th IN WAIVER UTILIZATION IN 2009, NEW MEXICO 8 TH AND LOUISIANA 16 TH * * Federal-State HCBS Waiver spending per citizen of the general population. Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
33 II.3 MEASURING COMMITMENT TO I/DD SERVICES:FISCAL EFFORT & OTHER METRICS Fiscal effort is a ratio that can be utilized to rank states according to the proportion of their total statewide personal income devoted to the financing of I/DD services. Fiscal effort is defined as a state’s spending for I/DD services per $1,000 of total statewide personal income.
34 FISCAL EFFORT FOR I/DD SERVICES IN TEXAS LAGS U.S. AVERAGE FOR 33 YEARS, DECLINED Source: Braddock, D., State of the States in Developmental Disabilities, (Texas ranked 50 TH in 2009) U.S. TEXAS
35 LEADERS AND LAGGARDS IN I/DD FISCAL EFFORT*: 2009 *Fiscal effort is I/DD spending per $1,000 of statewide aggregate personal income. (LOUISIANA 6 TH, NEW MEXICO 15 TH AND TEXAS 50 TH ) Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
37 III.RECENT TRENDS IN: Family Support, Supported Employment,& Aging Caregivers 1.FAMILY SUPPORT 2.SUPPORTED EMPLOYMENT 3.IMPACT OF AGING CAREGIVERS
38 III.1: FAMILY SUPPORT DEFINED FAMILY SUPPORT INCLUDES Respite Family counseling Architectural adaptation of the home In-home training, education, behavior management Sibling support programs, and Purchase of specialized equipment “CASH SUBSIDY FAMILY SUPPORT” INCLUDES: Payments or vouchers directly to families; families determine what is purchased
39 FAMILIES SUPPORTED IN TEXAS ARE 12% OF TOTAL ESTIMATED I/DD CAREGIVING FAMILIES Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
40 FAMILIES SUPPORTED: TEXAS LAGS THE U.S. AVERAGE Source: Braddock, D., State of the States in Developmental Disabilities, 2011.
41 “While supported employment has made significant gains since its formal introduction in 1984 (P.L ), segregated services continue to outpace the growth of supported employment nationally.” True in 2004 and true today. (Rusch & Braddock, Research and Practice for Persons with Severe Disabilities, 2004) III.2: SUPPORTED EMPLOYMENT
42 PER CAPITA* SUPPORTED EMPLOYMENT WORKERS IN LOUISIANA AND TEXAS LAST IN U.S. *Per 100,000 of General Population
43 III.3: IMPACT OF AGING CAREGIVERS
s: 59.1 years 1993: 66.2 years U.S. General Population: 70.4 years In the future “…those without severe impairment can be expected to have a life span equal to that of the general population.” LONGEVITY INCREASES FOR PERSONS WITH AN INTELLECTUAL DISABILITY Source: M. Janicki. (1996). Rehabilitation Research and Training Center on Aging and Mental Retardation, University of Illinois at Chicago.
45 20% OF PERSONS WITH I/DD LIVE AT HOME WITH CAREGIVERS AGED 60 YEARS OR MORE TEXAS
46 STATES WITH GREATEST AND LEAST PROPORTIONS OF RESIDENTS AGED 65+ YEARS, ‘09 Source: U.S. Bureau of the Census, 2010 New Mexico 32 nd and Louisiana 38 th
47 AGED 65+ YEARS: AGING POPULATION DOUBLES , U.S. Source: U.S. Bureau of the Census, 2009
48 III.4: ECONOMIC UNCERTAINTY IN THE STATES
49 ONLY THE DISTRICT OF COLUMBIA IS CONFIDENT ABOUT THE U.S. ECONOMY
51 CHANGING POPULATION MIGRATION IN THE STATES Source: Federal Funds Information for States (2009). State Policy Reports, Vol. 27, No. 21.
52 STATE BOND RATINGS: AUGUST 2011
53 1. GENERAL ADVANCES 2. SMART HOME TECHNOLOGIES 3. PERSONAL SUPPORT TECHNOLOGIES 4. CLOUD COMPUTING IV. DEVELOPMENTS IN TECHNOLOGY
54 THE ARC’s PROPHECY: 22 YEARS AGO There is a prevailing belief …in the field of assistive technology that people with mental retardation are not appropriate consumers of assistive technology… People with mental retardation should be named as a ‘traditionally underrepresented group’…It is the belief of the Association for Retarded Citizens of the United States that advances [in AT] will not occur without strong leadership from our federal government (Cavalier, 1988) Source: Testimony of A. Cavalier before the Senate Subcommittee on the Handicapped, IV.1 GENERAL ADVANCES IN TECHNOLOGY
55 ADVANCES IN MICROELECTRONICS Dramatic increase in price-performance of computing technology Advances in wireless technology, GPS, broadband, and web-based services Improved access to computers & the Internet including voice recognition systems Easier to use Personal Digital Assistants (PDA’s) with “prompting capabilities” and “context- awareness” Source: D. Braddock, State of the Science Conference, Denver, 2006.
56 A NEW GENERATION OF TECHNOLOGIES Sources: Adapted from Business Week, August 25, AS SOME MARKETS MATURE… NEW HIGH- GROWTH MARKETS EMERGE…
57 “I think we can do a ‘virtual nursing home’ with technology”… Andy Grove Co-Founder, Intel Corp. In USA Today, 2006 IV.2: DOWN TO EARTH: SMART HOME TECHNOLOGY
58 U.S. DEMAND FOR ID RESIDENTIAL SERVICES IN THE NEXT DECADE IS 165,000 Projected from Source: Braddock, D., State of the States in Developmental Disabilities, UNITED STATES
59 I/DD RESIDENTIAL SERVICES EXPECTED TO GROW BY 31,000 PERSONS Projected from Source: Braddock, D., State of the States in Developmental Disabilities, TEXAS
60 INTEGRATED WIRELESS SENSOR NETWORKS IN THE FUTURE: A combination of wireless cell phone, Internet, and sensor technology will connect people, objects, and events. Smart homes/care will play key roles in assisted living for persons with I/DD, allowing seamless connectivity between clients, caregivers/health care providers, and parents.
61 WHERE TO PUT WIRELESS SENSORS? TWO PRIMARY METHODS TO REMOTELY MONITOR A PERSON’S PHYSICAL AND MENTAL STATE AND LOCATION: 1.Via instrumenting the environment (Sensors located in rooms, on doorways, drawers, faucets, light switches, mattresses, pill bottles, etc.) 2.Via sensors located directly on people Both have advantages: environmental sensors are less instrusive, and do not require user compliance. Person sensors offer more direct measurement.
62 MIT PLACELAB - BEHIND THE SCENES Context-aware PDA with wireless sensors/motes Source: MIT PlaceLab website at
63 Source: Braddock, D., Coleman Institute, University of Colorado, U.S. SMART HOME SERVICE PROVIDERS FOR PERSONS WITH ID IMAGINE! BOULDER AND LONGMONT, COLORADO REST ASSURED, LLC., LAFAYETTE, INDIANA SOUND RESPONSE, MADISON, WISCONSIN
64 IMAGINE! SMART HOME, BOULDER, COLORADO: COMPLETED 2009 Imagine! Smart Homes in Boulder and Longmont, Colorado
65 IMAGINE! SMART HOME, BOULDER, COLORADO: GREEN TECHNOLOGIES Geothermal systems heat and cool the home Photovoltaic cells generate electricity
66 IMAGINE! SMART HOME, LONGMONT, CO, OPENED MAY 2011 Imagine! Smart Homes in Boulder and Longmont, Colorado
67 Private donations HUD Cities of Boulder and Longmont State of Colorado/Medicaid FUNDING FOR HOMES
68 Employee/manager portal for centralized information collection and reporting Web-based medication prompt system Location based activity prompting/logging Web based training courses Lifelogging of resident histories Family portal for daily activities and health status with text and picture-sharing STAFF SYSTEMS IMAGINE! SMART HOMES, BOULDER/LONGMONT
69 Accessible control of environment and appliances Accessible, safe kitchen and bathroom Cameras monitor high-risk areas Automated windows and doors Task prompters and reminders Specialized, accessible PC, Internet, journaling and web conferencing CONSUMER, ENVIRONMENTAL AND COMMUNICATIONS ADAPTATIONS IMAGINE! SMART HOMES, BOULDER/LONGMONT
70 Activity and safety sensors are utilized: bio-metric, motion, pressure, contact, security, fire, temp, nurse call, door threshold. Residents’ badges provide location, call for assistance. Real-time resident monitoring, alerts, reporting and care planning. ELITE CARE/CUROTEK WEB- BASED MONITORING SYSTEM IMAGINE! SMART HOMES, BOULDER/LONGMONT
71 IMAGINE! SMART HOME ADAPTS ELITE CARE WEB-BASED MONITORING SYSTEM
72 Creating Autonomy-Risk Equilibrium Infrared/RF tracking Pendant Assistance calls Bed weight, threshold, motion Control lights, locks, appliances Programmable events/alerts Building sensors/controls Real-time Intra/Intranet DB Reports, trends, queries Oregon Assisted Living Oatfield Estates Jefferson Manor Holistic care model Open building design Supportive technology Elite Care Technologies CARE Systems
73 Elite CARE Copyright 2001 Assist resident Badge detects when resident reaches his/her room Unlock their doors Turn lights on/off Turn ceiling fan on/off Disable unsafe appliances Predict/prompt activity (future) Using statistical modeling Source: Elite Care Corp. SMART HOUSE BADGE
74 REST ASSURED PROGRAM Staff person monitors several apartments simultaneously.
75 Uses PTZ (Pan, Tilt, Zoom) cameras for monitoring in high risk areas like the kitchen Remote supervision via two-way audio/video communication with caregiver Motion, temperature, carbon monoxide, and door brake sensors used in, in addition to a Personal Emergency Response System Consumers report increased independence; caregiver is not a constant physical presence in the house Reduced overall cost of care Currently used primarily for third-shift support Source: Rest Assured, Wabash, Indiana. REST ASSURED PROGRAM
76 Developed in collaboration with EPICS (Engineering Projects In Community Service) at Purdue University Serves consumers with ID Nearly 300 homes and apartments with over 400 consumers served in eight states: FL, GA, IL, IN, KS, MD, OH, & WI Recent agreement with Humana to market technology to 500,000 elderly caregivers Source: Dustin Wright, General Manager, Rest Assured, LLC, Wabash, Indiana. REST ASSURED PROGRAM–ATTRIBUTES
77 Professional Monitors Communication between Monitor and staff/ individuals served Access to protocols and personal intervention strategies Provider agency back-up Individualized alarm readings Generates reports SOUND RESPONSE SYSTEMS: MADISON
78 SENSORS Personal Pagers Door/Window Security Sensors Smoke Detectors Carbon Monoxide Detectors Flood/Moisture Sensors Motion/Sound Sensors Stove Sensors Incontinent Detectors Other Sensors Available Upon Request
79 Completely Wireless in the Home Cellular Transmission- No Phone or Internet Connection is Required 2-Way Communication Event Sequencing Data Tracking Portable and Adaptable to People’s Homes and Abilities EQUIPMENT FEATURES Sound Response costs average between $25 to $850 per person per month
80 INDIANA GOVERNOR MITCH DANIELS ENDORSES SMART HOME TECHNOLOGY “We can alleviate some of the demand for Direct Support Professionals (DSPs) by identifying new service options for people who do not need intensive DSP support. The system is tailored to the needs of each person who uses it and has been shown to improve personal independence, as well as alleviating the needs for a direct support professional where one is not needed.” Mitch Daniels, Governor, State of Indiana The Arc of Indiana, Meet the Candidates, Summer 2008
81 CURRENTLY HAS MEDICAID WAIVER AMENDMENT APPROVED BY CMS INDIANA, KANSAS, LOUISIANA, OHIO, & WEST VIRGINIA SELF-DIRECTED WAIVER ALLOWING FOR TECHNOLOGIES WISCONSIN STATES EXPRESSING INTEREST IN SUBMITTING WAIVER AMENDMENTS FOR TECHNOLOGIES TO CMS KENTUCKY, MASSACHUSETTS, & NEW JERSEY STATES WITH MEDICAID SUPPORT FOR SMART HOME TECHNOLOGIES
82 RECOMMENDATIONS: oAdopt early: learn from experience oStart small: expand incrementally oAdopt gradually: change care procedures oAssess needs, cost-benefits, & risk oPlan pilot & evaluation with R&D partner oSource: Rodney Bell, Coleman Institute consultant (2007) Care information systems … on webPredictive modeling Cognitive Assistance EVOLUTION OF SMART HOME TECHNOLOGY We are here
83 1.PDA Task Prompting Software 2.Adapted Web Browser 3.Adapted 4.Audio Books 5.Location Tracking 6.Personal Support Robots, Teaching Technologies II.3: PERSONAL SUPPORT TECHNOLOGIES
85 A pocket personal computer with an integrated PC-slot digital camera; Staff/caretakers take pictures of— and narrate--the steps in a task; SOURCE: Ablelink Technologies, Colorado Springs. The verbal instructions and images guide users through the steps: – Grocery shopping – Medications – Personal hygiene – Using public transportation, etc. VISUAL ASSISTANT
86 Adapted Web Browser The Web Trek adapted web browser improves access to the World Wide Web for people who have difficulty with reading and writing. ADAPTED WEB BROWSER AND SOURCE: Ablelink Technologies, Colorado Springs. Adapted Program
88 LOCATION TRACKING Nextel mobile locator: Wherifone: Accutracking: 911 to go: Contact your cell phone provider for phones/services
89 TREKKER BREEZE GPS Verbally announces the names of streets, intersections and landmarks as you walk. Source: g/browse.cfm/trekker- breeze-gps/
90 INDOOR WAYFINDING SUPPORT SOURCE: Participants preferred images with arrows, not audio alone [In Development]
91 PERSONAL SUPPORT ROBOTS Can serve as “life support partner” to follow a person from place to place, respond to commands, aid in activities of daily living, help with route finding, interact with others. Source: Maja J Mataric, University of Southern California, Viterbi School of Engineering
92 Animated Teaching/Learning Tools Students choose animated images representing themselves and their teacher. Then students use the animated characters to engage in learning activities such as reading instruction. Each of the 7 characters makes hundreds of emotions and expressions in real time. For more information contact Sarel Van Vuuren at / TEACHING TECHNOLOGIES
93 Envisions systems with wearable or environmental sensors that infer a user’s context and cognitive state. Prompts, reminders, and other forms of automatic intervention. Tasks addressed include navigation, remediation of memory impairments, behavioral self-regulation, and monitoring and guidance in the performance of ADLs. Henry Kautz Department of Computer Science University of Rochester, January 2010 COGNITIVE ASSISTANCE FRONTIER
94 PETER BLANCK, PhD, JD, Chairman, Burton Blatt Institute, Syracuse University DAVID BRADDOCK, PhD, Chair of Conference, Associate VP, University of Colorado ANN CALDWELL, PhD, Chief Research and Innovations Officer, The Arc of the US HENRY CLAYPOOL, Director, Office on Disability, US DHHS BILL COLEMAN, founding donor, partner, Alsop-Louie Partners, San Francisco DIANE COYLE, PhD, economist, internationally acclaimed author of The Economics of Enough: How to Run an Economy as if the Future Matters, Princeton Univ. Press MARK EMERY, CEO, Imagine! Colorado JIM GARDNER, PhD, President and CEO, The Council on Quality and Leadership SHARON LEWIS, Commissioner, Administration on Developmental Disabilities, US Department of Health and Human Services (USDHHS) WILLIAM POUND, Executive Director, National Conference of State Legislatures JO ANN SIMMONS, Board Chair, National Down Syndrome Society SUE SWENSON, Deputy Assist. Secretary for Special Education and Rehabilitation NANCY THALER, Executive Director, National Association of State Directors of Developmental Disabilities Services (NASDDDS) Coleman Institute Conference, October 13, 2011 in Westminster, CO State of the States, State of the Nation: 2011 ColemanInstitute.org
95 CONTACT INFORMATION David Braddock, Ph.D. Coleman-Turner Professor of Psychiatry & Executive Director Coleman Institute for Cognitive Disabilities University of Colorado System (SYS 586) 3825 Iris Avenue, Suite 200 Boulder, CO Phone: