Greater Nashua Consumer Directed Services

1. Greater Nashua Consumer Directed Services State of the Art Consumer Directed Services For Families, Children, Adults and Elders September 19, 2002

2. Lakes Region Agenda • Building The Foundation • Where Are We Today • Getting The Individual Process Started • Developing the Individual Budget • Individual Stories • Struggles & Insights • New Initiatives • Questions & Answers

3. Greater Nashua

4. Building the Foundation • We believe that choice and control can be enhanced if a family or individual assume true management control of funded supports and services • We believe that the supporting agency needs a strong foundation of multi-level support to stand behind the families and individuals who have joined the management team

5. First Steps • Developed concept in 1997 • Build true Consumer Directed Model • Meet people on Wait List and in Crisis and offer alternative to agency & program directed services • Create economy through careful allocation of funds and additional close management by consumers

6. Change From Top to Bottom • Success required total agency support • Advisory Group of administration, quality, business, service coordination, human resources, and family support met for two years. • Worked through personnel, contractual, choice, budgeting, funding, and other start-up issues. • Transition to a new business practice supporting choice and control

7. Network Change • Great Nashua uses 16 vendors • Vendors hesitant to offer some models • Vendors bound by history and practice • Area Agency bound by CM practice • New CDS opened in the midst of existing services providing solid option at Area Agency for individual budget and consumer directed management

8. We Imagined That….. • Families and individuals would come to us to resolve problems arising from traditional system roadblocks • Service Coordinators would eventually refer as CDS became integrated into Area Agency operations • Our future regional system would be at least 10% CDS

9. We Hoped That…… • We would create a transformational service which would both change our agency as well as change the lives of the people we support through access to new options • Families and individuals would manage their funds wisely and prudently and achieve a lower average cost.

10. Where we are today……5 years later • 47 CDS participants (49 individuals) • 44 Adults (22-77) DD-ABD • 29 Live with Family • 6 live with roommates • 4 with ‘provider’ • 5 live alone • 3 Families with children • 2 on Waiver • 1 school funded • 6 Individuals take lead in their support • 12 Participants use Vendors • 20 Participants manage 27 Employees • 18 have assigned service coordinators • Medicaid Billing Categories • 28 521 Certifications • 7 Consolidated • 3 State Certified Residences • 9 Community Support Services

11. CDS Department Structure • Staff • Full time Manager • Full time Sr. Associate • Part time Financial Assistant (25 hr/wk) • Budgets total over $1,000,000 • Individuals manage ~$900,000 • Range ~ $4,000 to $78,000 • Average budget $21,000 • 47 Cost Centers + Department

12. What makes it different …… • Family use traditional ‘group’ funding to create 1 to 1 services • Family recruits, schedules and supervises workers • Family authorizes all payments • Family negotiates directly with Vendor for services and costs • Creates agreement to document negotiations • Family does Medicaid Attendance & Monthly report • Family uses ‘System’ to brain storm, provide education about the system, discuss options, check compliance with funding source, collaboratively problem solve Note:Family = Individual or Individual + Family

13. Getting Started With Consumer Direction • We knew we would need referrals to originate on a year round basis from the system that we oversee • We anticipated that there would be a number of stages of development in building this referral base

14. Referrals, Budgets, and Intake • Guided referrals come from Area Agency Crisis Team, Wait List Committee, and Administration • Service Planning referrals come from Teams, Service Coordinators, and Families • Problem Resolution referrals come from people facing obstacles in existing services

15. How To Figure The Money • Compare to existing system programs for a benchmark • For Day Programs use existing Medicaid rates • Cost up the actual service by adding different components • Provide teams at outset with estimate of revenue

16. Does this Family or Individual Belong In CDS? • There is an initial review of the facts of the referral by CDS and Administration • We check to determine if there is a strong element of consumer direction potential • We assess the basic feasibility of the funding, Medicaid restrictions, services desires, and issues of ability to trust

17. Are There Additional Resource Considerations? • There are some funding and service situations that preclude enrollment in CDS • The supports are structured with significant work at intake and development, and then consumer direction picking up most of the management maintenance • Additional resources have to be funded

18. Developing the Individual Budget • CDS has general idea of funding • Kitchen Table Planning • Reality based: discuss wants vs. needs • Key elements are the Individual/Family- THEIR: • Desired routine • Assessment of Quality • Knowledge & Insight of what works and what doesn’t work • Outcome individually designed & tailored ‘program’ • Find ‘best fit’ Medicaid category

19. Reality Based Budgeting • Stephanie’s Story Situation Single working Mom with daughter Graduating in June requiring 24 hour care Need Support Monday through Friday 8 am to 5 pm (activities, transportation, therapy) Vision To have an active week that involved community activities, opportunities to form friendships, one to one support and continuing therapies.

20. Sorry we can’t afford it! • Honest and open conversation about funding (cut budget by $20,000) • Need and Vision remained the same • Asked questions to clarify and prioritize needs • Budget line items • Day Hab cost/day • Transportation • Worker cost = rate of pay + % for taxes etc. • Area Agency % for GM and allocated expenses • Brain stormed ideas to develop staged plans • 2 Week plan – met immediate needs • 2 Month plan – gave time research & cost • Yearly plan – annualized costs • 3 years later we are still ok – Steph has 1 to 1 for 9 hrs/day • Mom has handled: her broken leg, worker’s maternity leave, and Vendor just about doubling their price

21. Past & Present Stories Three children with PDD/Autism Exhausted the resources of Home Health Providers • Pilot to build in-home supports • Costed out actual wrap around supports in workgroup with all involved from Executive Director to Family

22. Stories continued…… • Developed a schedule week to week and season to season that would interlock with the school resources • Due to size of staff team needed- added a liaison resource to help recruit and oversee personnel resources • Arranged for legal consult to review family plan to use teenage supports • Submitted plan for funding approval

23. Stories continued…. • Developed agreement with family and during initial implementation entire team met on regular schedule • Support structure is in place today and over 70 hours of week are arranged by family • Family oversees budget resources as well as provides documentation and management updates.

24. Struggles • Fitting family dreams into Medicaid categories • Family who always wants more money & is never satisfied • Lack of work force • Finding approaches that get the individual actively involved • Holding to the forefront the Consumer is directing their services • People in the service system don’t ‘see’ the control they exert • Always ask / think how would you handle the situation if there wasn’t a disability involved

25. Insights • CDS is not for everyone! • Trust that the Individual &Family know best • Individual & Family can do more than you think • With open honest communication & information family will work with you • The system doesn’t have to have the answers & often can get in the way • It is hard • It takes more time COSNUMER DIRECTION WORKS!

26. New Initiatives – what’s next …… • Personal Care Services • HBCB – ECI • Children's’ In-Home Support Waiver • ?

27. Your Turn …… • Questions & Answers • Thank you!