Charlottesville Region Autism Action Group -- CRAAG. Overview for Transition Council. November 14, 2016

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1 Charlottesville Region Autism Action Group -- CRAAG Overview for Transition Council November 14, 2016

2 CRAAG Mission and History One of 5 action groups serving Virginia Formed in county area Core group of parent volunteers with support from Commonwealth Autism, Region Ten, Worksource Current Areas of focus! Lifespan / transition issues! Outreach, awareness and advocacy! Improve cooperation between stakeholders Maximize value-added autism services by bringing together various organizations, schools, self-advocates, parents, local providers and others to maximize potential and quality of life across the Lifespan

3 Autism Spectrum Disorders (ASD) Prevalence of Diagnosis :68 1: s 1:150 1: 2500 A Health Care Tsunami

4 What is different about Autism? Autism is spectrum disorder If you have met one person with autism, you have met one person with autism The setting and level of support needed for individuals to live away from their families varies enormously

5 Unique Challenges of Autism Approximately 80% of adults with autism live with their aging parents due to lack of affordable housing and support One-third have a seizure disorder. Half suffer serious digestive complications Half wander/elope (injury or death often by drowning) More than 30 percent are non-verbal 70 percent of adults with autism have been abused / bullied More than 50 percent exhibit violence to themselves or others Over 80% are un-employed or under-employed

6 What keeps us awake What happens when we can no longer provide care and support? What happens when we are gone? How do we provide for financial security? How do we ensure health care, safety and security? How do we maximize independence, self esteem, quality of life How do we ensure continuity of care Concerns are Magnified as Parents and Caregivers Age

7 CRAAG Initiatives / Accomplishments Monthly Support Group Meetings Monthly Lifespan Meetings Dialog Series (2012 to 2015) Comprehensive Resource Directory UVA Autism Speaks U Mentoring Pilot Survey of Parent Concerns Transition and Adulthood Extensive Housing Survey / Benchmarking Best Practices Co-Housing Pilot with UVA Consulting Club

8 CRAAG Special Events Life After High School concerns, challenges, testimonials, JCHC Legislative Study (Jan 2014) Housing Strategies to Maximize Independence Funding, Support Services, Housing Solutions (Sep 2014) Autism Town Hall / Workshop 3 Delegates, 2 Senators, advocacy, issues, workshops (Sep 2015) Autism Housing, a Local Perspective legislative challenges, local realities, opportunities (July 2016) Hope House Benchmarking Workshop (Oct 2016)

9 CRAAG Current Focus is on Housing Solutions and Person Centered Support Strategies

10 Critical Success Factors! Person Centered Planning! Maximize Familiarity, Stability and Clarity! Minimize Sensory Overload! Service Delivery / Continuity of Care! Community Integration /Matching of Housemates! Employment and Transportation! Safety and Security! Affordability! Socialization opportunities, Privacy and Dignity A difficult challenge requiring Out of the Box thinking and proactive involvement

11 CRAAG / Region Ten Area Students with Autism % Increase over 6 years 148 HS Students Approaching Transition Source: VDOE Special Education Data Base

12 How Much Housing Do We Need? Pieces of the Puzzle?! Region Ten Forecast ID (5 yr) (Medical 49, Behavioral 48, General 93)! High School ASD count 148! DD Waitlist (not all ASD) - 46! Respondents to CRAAG Outreach - 30! Adults not on the Radar -??? A lot! There is No Comprehensive Source of Data 80% Adults with ASD Live With Family

13 What Level of Support is Needed? Source: Autism Speaks Housing and Residential Supports Survey, 2013 (n, 10000)

14 Housing Type vs Support Need Supported Living X X Supervised Living X X X Intentional Community Group Home (Vendor & Private) Apartments (incl co-housing) Transitional Residence High Medium Low?? X X X X High Level of Support X X Low

15 There are Many Barriers! Waiver Waitlist! Obstacles Under the hood of CMS Final Rule and Waiver Reform! Needs Assessment in new Waiver Environment puts higher functioning individuals out of reach for support! Biggest enabler to obtain services is death of parent or caregiver a benefit of old age! Lack of visible. proactive critical mass of self-advocates and parents to pressure legislators for more housing and services resources

16 Limited Support for Adults with ASD Seeking Independence Transition Support Availability > 21 Age With Waivers Support Needs Vary With Age but they Don t Go Away Black Hole Without

17 Waiver Waitlist ID ID State Total Served Waitlist ID - Region Ten Served is 55% of Total Need Total Served 276 Waitlist Slots in FY 2017 (includes 90 TC / 40 Emergency Reserve) * Source: Region Ten and DBHDS, as of May 2016

18 Waiver Waitlist DD Waitlist Served Total Served 1053 Waitlist Served is 31% of Total Need 200 Chronological Slots in FY 2017 Balance to be Integrated into New System * Source: Region Ten and DBHDS, as of May 2016

19 Waiver Reform Independent Reviewer Concerns! Provider capacity lacking to achieve compliance goals! too few service providers and qualified professionals with the expertise and experience to provide services to all individuals with intense needs or with Autism Spectrum Disorders or to provide services in integrated settings! Insufficient opportunities for ID / DD to live in most integrated setting! Insufficient community living opportunities! Individual support planning process that is inadequately focused

20 Waiver Reform Independent Reviewer Concerns (cont)! very large need for group home settings of four or fewer, especially for those with intense needs in some areas!. compliance (integrated setting provision) will not occur under the existing waiver programs because the existing rate structure could not support the cost of 4 bed homes! stakeholders at all levels identified lack of supplier capacity as a major concern! Commonwealth has not made significant progress on Agreement s provisions related to providing more integrated day and residential programs for individuals in community

21 Waiver Reform housing impact! CMS rigid requirements regarding settings stifle creativity in establishing most integrated settings in the spirit of Person Centered Planning.! Regulations, waitlist management and entitlements are structured to keep individuals in their family homes! Without a Community Living Waiver, the only setting that is truly affordable is parent s home until a crisis is created by death or ill-health! Even with a CL, there are profound capacity issues

22 Waiver Reform housing impact! Housing Choice Voucher Set Asides are stated to be available for Building Independence Waiver, however, local PHA is not aware and have other waitlist issues / priorities! Developers are reluctant to invest in mixed housing to support disabilities; VHDA Low Income Tax Credit preference not available for projects with >15% of target population. Developers reluctant to take risks in changing waiver environment Some concerned about impact on market rate renters VHDA low interest incentives are not available to families for anything that looks like a group home (ie, more than 4 individuals)

23 The Conundrum.! How do we solve the disconnect between existing need and available services?.. particularly for o Those with intense behaviors but no intellectual disabilities o Those who need constant supervision, but can perform most activities of daily living o Those who might be able to function well enough to live semi independently with the provision of life coaching.! How can Residential Housing be created for the diversity of population which ranges from those needing minimal assistance to those requiring more intensive support? How do we Maximize Independence and Quality of Life for Individuals with Autism

24 CRAAG Lifespan Housing Survey First Place, Phoenix Sweetwater Spectrum Virginia ID, DD, ASD alternatives Notable National Autism examples Facility ARC of the Piedmont Blue Ridge Commons Building A Bridge CRAAG (Charlottesville Region Autism Action Group) Lifespan Committee Survey of Housing Options for Adults with ID, DD, Including ASD * Commonwealth of Virginia and National Examples * Not an all inclusive list. Representative of CRAAG's best effort to identify options of interest. Accuracy not validated with providers. Last updated 9/2014. Virginia Location(s) Charlottesville, Albemarle, Nelson, Louisa Web Phone piedmont.org Housing Type 7 group homes and residential services Charlottesville Section 8, low income housing. No services Charlottesville dgescharlottesvil le.org/ (434) Charlottesville Albemarle n/a CRAAG (Charlottesville Region Autism Action Group) Group Home County Lifespan Committee Survey of Housing Options (privately for Adults with ID, DD, Including ASD * Commonwealth of Virginia and purchased) National Examples Residential community. Live-in staff offer supports and share the lives of residents in a family-type setting.. Privately purchased group home; separate bedrooms Virtual village of support for semiindependent Visit living. Disability Population Adults w/ ID and DD Adults w/ Traumatic Brain Injuries Adults w/ ID * Not an all inclusive list. Representative of CRAAG's best effort to identify options of interest. Accuracy not validated with providers. Last updated 9/2014. The Faison Richmond Young adults w/ Facility National Web/ Housing Disability Residence Capacity Financial ence.org Comments CRAAG ASD and other DDs who are Location Phone Type Population Compassionate generally Phoenix, AZ 50 unit Higher 50 apartments Unknown. a la carte menu of independent, but az.org/ supported functioning ASD planned, also Appears to be support services, "neighbors need support and similar a community close affiliation with looking out planned for wide project SW ASD Research for Also and Resource Center neighbors." Fredericksburg Spotsylvania 2 group Baptist Church County urgbaptistchurch homes, Male Sonoma, CA Unique pilot ASD-specific 4 four $3250/mo rent Founded.org in / Female rspectrum.org/h bedroom and community 2009, construction, ome0.aspx based upon homes, 16 fee based upon U of AZ best practice residents study Shire House San Jose, CA Blog: ore.com zbthkane62@g mail.com analysis Vision for apartment complex for adults w/ Asperger's Adults w/ Asperger's Unknown Unknown New visionary concept in its infancy worth tracking for Asperger's -1- Capacity Financial Comments CRAAG Visit Unknown Waivers and Appropriate fit for private pay individuals w/ ASD?? Fewer than 10 adults. 4-6 men and women 45 apartments for those with special needs and for those without (30%- 70% ratio) Section 8 subsidized Private pay. ID waivers Private pay. Availability of subsidies unclear. Low income housing, no services Dedicated to the rehabilitation and care of recently brain injured adults. Support services and staffing managed by Arc of the Piedmont. Clients volunteer or work from 9-3 daily. Team of professionals live in the village to support the needs of residents with special needs. Innovative HomeLink technology. Adults w/ ID Unknown Private? 2 privately funded homes. Part of Hopetree Services? Absent clear alternatives, we researched our own Yes Yes Yes

25 CRAAG Housing Assessment Identified 25 housing and support service organizations in VA Team visited 7, including one out of state Only 3 in VA had specific focus on autism 9 additional notable out of State autism examples identified Service delivery is a complex challenge Most successful models specific to autism seem to be parent driven and developed with private funding Rural settings a viable solution for some with high needs Few Alternatives in VA are Specific to Autism Most that Exist are Targeted at mid to low support need and are private pay

26 Notable Examples in VA (and locally)! Faison Residence o 40 / 60 mix of of autism and community o $15 million ($8.5 philanthropy, $6.5 VHDA low interest loan) o On site serviced apartments, good solution, early growing pains o VHDA would not invest today due to density of disability tenants! Richmond House o Transitional Life Skills Residence o 8 high function individuals o Continuum of services follows individuals migrating into semiindependent apartments o Founded by creative families, now part of Commonwealth Autism o Excellent model, currently private pay license pending

27 Notable Examples in VA (and locally)! Hope House Foundation (Hampton Roads Area) o Homes and apartments imbedded in the community o Individualized service approach from minimal to intensive needs o Excellent model, founded by families in 1964 o CRAAG sponsored a workshop with them this month! Innisfree Village (Albemarle County) o Private pay rural community near Crozet o Well established, (founded by families in 1971) o High component of volunteer support and philanthropy o Uniquely licensed the embodiment of creativity that works o CMS don t consider this an acceptable setting

28 Notable Examples in VA (and locally)! Family Teaching Model Residence (local area) o Private pay solution o Based upon well proven CLO (Kansas) model o Proven model, but expensive! Small Private Group Home (local area) o Imbedded suburban neighborhood just outside C ville limits o Privately owned by family member, 4 ID tenants o Waiver Services provided by ARC o Uniquely affordable investment due to foreclosure o Difficult to replicate with Charlottesville property prices

29 Housing Initiatives under Consideration! Rural community integrated homestead with gardening opportunities aimed at medium to high intensity needs! Supported Apartments (new or refurbished) with person centered supports, integrated with non-disabled residents! Group Home (3 6) for compatible individuals of similar support needs, parent driven! Transitional residence for teaching skills necessary to maximize independence Priority will be a Function of Level of Interest

30 What are the alternatives.? Watch it happen and lose more sleep trying to manage the outcome Wait for the government to fix it a long time Assume providers will have solution when we need it not likely Privately pay for the best of the best only for the fortunate few OR... Become proactively involved, become informed and make something happen with the resources available

31 CRAAG Monthly Meetings CRAAG / BRCC Special Needs Support Group! Second Friday, 12:30 to 2:30PM, First Presbyterian Lifespan Committee! 4 th Wednesday, 10 to 12PM, Worksource Enterprises! This month, November 30 (5 th Wednesday due to TG)! Attendees include parents, Region Ten, Commonwealth Autism, VIA, DBHDS (housing coord)! Focus is currently on autism housing and services, however, solutions will help other disabilities

32 Charlottesville Region Autism Action Group CRAAG Thank you

33 Charlottesville Region (CRAAG) Thank-you!