State of Developmental Disabilities in Georgia

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State of Developmental Disabilities in Georgia

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1. State of Developmental Disabilities in Georgia Governor’s Council on Developmental Disabilities Georgia Advocacy Office Institute on Human Development and Disability Marcus Institute

2. Challenges in DD Services Olmstead in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging 1.8 % of the people in Georgia have developmental disabilities. That is about 125,000 people. Here are some of the challenges in DD services. 1.8 % of the people in Georgia have developmental disabilities. That is about 125,000 people. Here are some of the challenges in DD services.

3. Departments and Services There are a variety of agencies that overlap and also operate separately from each other. Services all over and fracturedThere are a variety of agencies that overlap and also operate separately from each other. Services all over and fractured

4. History of Olmstead 1999 US Supreme Court decision Plaintiffs Lois Curtis and Elaine Wilson Attorney Sue Jamieson Plan Multi-agency stakeholder committee (2001-2002) identified number of people to be transitioned funding needed time frame Governor Barnes unable to commit to effort No plan formally submitted Governor Perdue modified the plan with document of intents No mechanism for accountability

6. Fiscal Effort: A ratio utilized to rank states according to the proportion of their statewide personal income dedicated to financing DD services (Braddock & Fujiura, 1987). The State’s fiscal effort was $2.42 in 2006, far below the U.S. average ($4.16). Georgia ranked 48th in ID/DD fiscal effort in 2006.Fiscal Effort: A ratio utilized to rank states according to the proportion of their statewide personal income dedicated to financing DD services (Braddock & Fujiura, 1987). The State’s fiscal effort was $2.42 in 2006, far below the U.S. average ($4.16). Georgia ranked 48th in ID/DD fiscal effort in 2006.

7. About 1100 persons with disabilities in Georgia state hospitals. Georgia still maintains 5 large state hospitals Braddock report As of June 2005, 1,190 individuals with DD lived in large state hospitals, and 1,576 individuals with ID/DD lived in nursing homes. This number has only decreased slightly.About 1100 persons with disabilities in Georgia state hospitals. Georgia still maintains 5 large state hospitals Braddock report As of June 2005, 1,190 individuals with DD lived in large state hospitals, and 1,576 individuals with ID/DD lived in nursing homes. This number has only decreased slightly.

8. Hospital Issues State Hospitals Are understaffed Have under-trained employees Have high turnover rates Overuse medications and restraints Lack effective transition plans for people to move out Lack capacity to transition people successfully back to the community Atlanta Journal Constitution report on abuse and neglect in state institutions; focus was on mental health primarily, but 1100 individuals with DD still reside in state hospitals, so the concern is shared.Atlanta Journal Constitution report on abuse and neglect in state institutions; focus was on mental health primarily, but 1100 individuals with DD still reside in state hospitals, so the concern is shared.

9. Network Response to Olmstead HR 1307 5-year plan for funding home and community-based services Funding package includes transitioning people from institutions Since 2005, this effort has resulted in 4000 new services, and of those services 304 were for institutional transitions. There have been 114 actual placements. OCR Complaint Current waiting list figures (as of May, 2007) Long term list: 2541 Short term list: 3044 The institutional placements.  total was 284 institutuion placement services allocated, (304 if you include 2005) and 114 were placed counting 2005 Current waiting list figures (as of May, 2007) Long term list: 2541 Short term list: 3044 The institutional placements.  total was 284 institutuion placement services allocated, (304 if you include 2005) and 114 were placed counting 2005

10. Network Response to Olmstead Real Choices Systems Change grants Transition program that builds on model Peer Support Program Direct Support Staff development initiative Medication Certification Program Improvement in communication policies, procedures in agencies providing long term care services Development of regional access system for MH and DD services Develop uniform individual budgeting mechanisms Design key features of self-directed service delivery system Money Follows Person Rebalancing Georgia will move 1347 individuals from nursing homes and large state institutions with $34,000,000 in funding over 5 years

11. Challenges in DD Services Olmstead in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging

12. EPSDT Environment Eligibility: Constant challenges to eligibility Many categories of Medicaid access, with varying eligibility criteria Access: Providers discouraged from serving families resulting in service gaps Excessive paperwork Prior authorization process Low reimbursement rates Coverage Caps and limits to services Certain services excluded from state plan Georgia’s children are not receiving all that they are entitled to under the Medicaid Act CMOs: largest move to managed care in history of country: 1.5 million covered lives in less than a year. Disease management, 100,000 aged, blind, disabled Challenges to Babies Can’t Wait system; loss of providers, delays, denied services Georgia’s children are not receiving all that they are entitled to under the Medicaid Act CMOs: largest move to managed care in history of country: 1.5 million covered lives in less than a year. Disease management, 100,000 aged, blind, disabled Challenges to Babies Can’t Wait system; loss of providers, delays, denied services

13. Katie Beckett/Deeming Waiver State revised level of care criteria 2000 families kicked off Medicaid Legislature allocated $7.6 million in transitional funding (2006) $5.4M allocated as cash disbursements to families denied Medicaid $2600 dispersed to each family via a debit card $2.2M set aside for development of community-based funding mechanism and program

14. Among the HCBS Waiver services not provided are assistive technology, communication devices, personal assistants, financial subsidy to families, and therapies such as PT, OT, speech/language, psychologist. Among the HCBS Waiver services not provided are assistive technology, communication devices, personal assistants, financial subsidy to families, and therapies such as PT, OT, speech/language, psychologist.

15. New Options Waiver (NOW) Focus on day supports, and a comprehensive waiver for residential and support services Supports Intensity Scale: Consumer need is based on the SIS and services will be individually tailored according to the results of the SIS Individual Budgets: the SIS will determine within a range how much funding is available to meet person’s identified needs Choice of Services: Families will have more options for arranging support for their member, or they can remain in the services they have Other states have our waiver and they are enjoying it Josh ask what states have adopted this California Louisiana ??Other states have our waiver and they are enjoying it Josh ask what states have adopted this California Louisiana ??

16. NOW Waiver Financial Support Services: Families can choose their providers and use the fiscal agent to pay the bills for them, including background check, taxes, SS, W-2s, etc New Services payable under the waiver Dental Natural Support Training Transportation OT, PT, Speech, Nutrition Behavioral support Community Guide Go live October 1 Consumers will be phased in on their birthdayGo live October 1 Consumers will be phased in on their birthday

17. Network Response to Challenges in Medicaid Convening stakeholder groups to share information on CMO implementation Preparing memos and briefs on impact of changes to Medicaid Communicating with parents to provide information and encourage advocacy Collecting and analyzing data Informing legislators about impact on families Legal action 1115 waiver group, prepared memo on concerns with 1115 proposal; got it killed Shared information on CMO implementation with healthcare advocates and also vetted the CMO bidders Now convening a group to forward critical issues regarding CMO care and impact on young children Will share information with legislators prior to session1115 waiver group, prepared memo on concerns with 1115 proposal; got it killed Shared information on CMO implementation with healthcare advocates and also vetted the CMO bidders Now convening a group to forward critical issues regarding CMO care and impact on young children Will share information with legislators prior to session

18. Challenges in DD Services Olmsted in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging

19. Provider Capacity is a Priority Limited or no choices in rural Georgia Variable quality of providers Tendency toward congregate settings High turnover in front line workers and support coordination Below average reimbursement rates Need a new array of providers with new waivers Rural Institutional bias No examples Favor group vs individualized servicesRural Institutional bias No examples Favor group vs individualized services

20. Sources: Average wage for all workers in Georgia in 2002 (Bureau of Labor Statistics, 2006); average wage for “community ID/DD” for the U.S. and Georgia and “state-operated” for Georgia for 2002 (Lakin et al., 2003); nursing aides’ wage in the U.S. in 2002 (BDO Seidman, 2002); and poverty level wage in the U.S. for a family of four in 2003 (ASPE, 2003). Sources: Average wage for all workers in Georgia in 2002 (Bureau of Labor Statistics, 2006); average wage for “community ID/DD” for the U.S. and Georgia and “state-operated” for Georgia for 2002 (Lakin et al., 2003); nursing aides’ wage in the U.S. in 2002 (BDO Seidman, 2002); and poverty level wage in the U.S. for a family of four in 2003 (ASPE, 2003).

21. Direct Support Professionals Development Collaboration with MHDDAD Real Choices Systems Change Grant Aging Mental Health Division of Adult and Technical Education GCDD Standard curriculum offered at 7 technical institutions Formation of Direct Support Professional Alliance Funded collaboratively by MHDDAD Real Choices Systems Change Grant, GCDD, Healthcare Georgia Foundation, HOPE grants Expansion planned to 5 more tech schools this year Development of hybrid program with College of Direct Support for classroom-based content, and development of standard field work component; provide greater access to curriculum Funded collaboratively by MHDDAD Real Choices Systems Change Grant, GCDD, Healthcare Georgia Foundation, HOPE grants Expansion planned to 5 more tech schools this year Development of hybrid program with College of Direct Support for classroom-based content, and development of standard field work component; provide greater access to curriculum

22. Network Response to Provider Capacity Supporting and promoting state efforts to develop provider capacity Signaling to providers that money will be available for integrated and inclusive home and community –based services Educating people about services available in the NOW waiver and how to access them Supporting provider rate increases Rural Institutional bias No examples Favor group vs individualized servicesRural Institutional bias No examples Favor group vs individualized services

23. Challenges in DD Services Olmsted in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging

24. Georgia ranked 36th in the number of families supported per capita (general population) in 2006, 76 per 100K vs. 137 per 100K, U.S. State funding has decreased to 17% of total MR/DD funding: Georgia ranked 36th in the number of families supported per capita (general population) in 2006, 76 per 100K vs. 137 per 100K, U.S. State funding has decreased to 17% of total MR/DD funding:

25. Network Response to Decreased Support Demonstration and Funding Proposals Provided within MRWP waiver as “Natural Supports” Some state funded Family Support 360 grant 24 established Navigator Teams With the support of Children’s Trust Fund dollars and Parent Leadership Coalition Support 30 more Navigator Teams will be established in the next year Family support includes respite, family counseling, architectural adaptation of the home, in-home training, sibling support programs, education and behavior management services, and the purchase of specialized equipment to be used by the family. “Cash subsidy” consists of payments or vouchers directly to families; families determine what services or items are purchased. Georgia ranked 36th in the number of families supported per capita (general population) in 2006, 76 per 100K vs. 137 per 100K, U.S. Georgia has had very successful family support demonstration and evaluation projects. Can make the case for increased state funded services. Family support includes respite, family counseling, architectural adaptation of the home, in-home training, sibling support programs, education and behavior management services, and the purchase of specialized equipment to be used by the family. “Cash subsidy” consists of payments or vouchers directly to families; families determine what services or items are purchased. Georgia ranked 36th in the number of families supported per capita (general population) in 2006, 76 per 100K vs. 137 per 100K, U.S. Georgia has had very successful family support demonstration and evaluation projects. Can make the case for increased state funded services.

26. Challenges in DD Services Olmsted in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging

27. IDEA: Children Served Child Counts (2004) Age 3 -5: 20,801 Age 6- 21: 175,127 Highest incidence SLD SLI MR/DD ED OHI SB 10 Bill Will enable parents to take their child’s state “full time equivalent” funding to private school, or other public schools Requires schools have to be accredited and registered with the Department Requires parents to leave their due process rights at the doorSB 10 Bill Will enable parents to take their child’s state “full time equivalent” funding to private school, or other public schools Requires schools have to be accredited and registered with the Department Requires parents to leave their due process rights at the door

28. IDEA State’s performance goal for 3 years Include 90% of the children with special needs in the regular classroom at least 80% of the day Effort has resulted in significant improvement in the state’s CRCT test scores: SWD made gains in every subject in every grade SB 10 Bill Will enable parents to take their child’s state “full time equivalent” funding to private school, or other public schools Requires schools have to be accredited and registered with the Department Requires parents to leave their due process rights at the doorSB 10 Bill Will enable parents to take their child’s state “full time equivalent” funding to private school, or other public schools Requires schools have to be accredited and registered with the Department Requires parents to leave their due process rights at the door

29. Current Issues in Education Senate Bill 10 Revision of diploma regulations Special education funding formula revision SB 10 Bill Will enable parents to take their child’s state “full time equivalent” funding to private school, or other public schools Requires schools have to be accredited and registered with the Department Requires parents to leave their due process rights at the doorSB 10 Bill Will enable parents to take their child’s state “full time equivalent” funding to private school, or other public schools Requires schools have to be accredited and registered with the Department Requires parents to leave their due process rights at the door

30. Challenges in DD Services Olmsted in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging

31. Transition Each year about 700 students with developmental disabilities exit the school system and go on the waiting list for adult services Challenges include making multiple systems work together for employment and real community activities

32. Network Response to Transition Issues Statewide Transition Steering Committee Convened by the DD Council and DOE Meets regularly to review best practices , disseminate information, and recommend policy to the State Advisory Panel and the State Board of Education Working on diploma options, special education funding formula, and successful models for employment Supports Partnership for Success Inclusive High School Grant Will advise Transition Component of Employment First Georgia Institute

33. Challenges in DD Services Olmsted in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging

34. Employment 19.7% of adults with developmental disabilities in supported employment By end of 2007 the goal is 25% 80% of employment was sheltered employment, facility-based work models and non-work models (2004) Only 20% was integrated employment Georgia has to make a switch from facility non-work day services to integrated, community-based employment MHDDAD, DHR Board Report Fiscal 2007 performance indicators, adults who are currently served in waivers Employment First is the emphasis for the new waiver MHDDAD, DHR Board Report Fiscal 2007 performance indicators, adults who are currently served in waivers Employment First is the emphasis for the new waiver

35. Network Response to Employment Issues Provide opportunities for employers and consumers to see innovative employment in action Sponsors Discovery Day which Allows corporate Atlanta opportunity to explore employment opportunities for people with disabilities Provides opportunity for employers, providers, and people with disabilities to meet, exchange ideas and network Established and partially funded Employment First Institute Sponsored by major corporations Presentation about Employment First in the afternoon.Sponsored by major corporations Presentation about Employment First in the afternoon.

36. Challenges in DD Services Olmsted in Georgia Medicaid: EPSDT, Katie Beckett, and Waivers Provider Capacity Family Support Education Transition Employment Aging

37. Aging: People with DD are Healthier and Living Longer 17,000 Georgians are living with caregivers over 60 years old Respite is greatest unmet need of older families caring for adults with disabilities 35% are living with middle-aged caregivers Long waiting lists for community services, even those on the short term list Mean age at death rose from 19 years in 1930 to 66 years in 1993 (247% increase) Persons with DD age 60+ estimated to increase three-fold in the next 20 yearsMean age at death rose from 19 years in 1930 to 66 years in 1993 (247% increase) Persons with DD age 60+ estimated to increase three-fold in the next 20 years

38. Network Response to Aging Challenge Support Aging and Disability Resource Connection (ADRC) Located in Atlanta and Augusta Handled 45,000 contacts for resource and referral network State legislature funded three additional sites Coastal Georgia AAA and MHDDAD Region 5 Northeast Georgia AAA and MHDDAD Region 2 Southern Crescent AAA and MHDDAD Region 1 Support Naturally Occurring Retirement Communities

39. Georgia is Improving! Georgia’s national ranking has moved from 44th to 30th with regard to community based services! Unlock Presentation will expand on this.Unlock Presentation will expand on this.

40. State Treasures Olmstead state Sue Jamieson Elaine Wilson Lois Curtis Connie and John O’Brien Citizen Advocacy Collaboration within the DD network We are doing great things on a regional/local level and then not taken to the state levelWe are doing great things on a regional/local level and then not taken to the state level

41. Major Collaborative Projects Children's Freedom Initiative Unlock the Waiting List Campaign Self Advocacy Employment First Georgia After lunch we will look at each of these in detail. After lunch we will look at each of these in detail.

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