Prepared by The Arc of Washington State ~ ~

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1 Prepared by The Arc of Washington State ~ ~

2 Developmental Disabilities Grassroots Advocacy Community Values Developmental Disabilities advocacy represents the statewide effort of individuals with developmental disabilities, their family members, service providers and disability organizations. We are joining together to promote quality community-based services for all people with developmental disabilities. Times have changed from the days when children and adults with significant disabilities were segregated, moved into institutions, denied education and opportunities to work and participate in our communities. The majority of people with developmental disabilities now live with their families or in their own homes, with support to be as independent as possible. As a result of changing values, and with the support of state and federal government funding and policies: Children with developmental disabilities participate in school, adults gain employment, and our communities benefit. Unlike the old days of defining people by what is wrong with them, community DD advocacy is based on the fundamental belief that having a disability is a normal part of life. These are not the opinions of a few groups; they are the values of a state and nation moving forward. Prepared by The Arc of Washington State ~ ~

3 Children & Adults with Intellectual/Developmental Disabilities Who has an Intellectual/Developmental Disability? RCW 71.A defines people with developmental disabilities as having mental retardation (intellectual disability), cerebral palsy, epilepsy, autism or other neurological conditions similar to mental retardation. Most importantly people with developmental disabilities are our Family Members Neighbors Friends Classmates Co-workers What are the Major Causes? The majority of causes are unknown. Some identified causes are related to chromosomal abnormalities damage to the central nervous system birth trauma genetics injuries. How Many People have an Intellectual/Developmental Disability? Approximately 1.58% of the general population is estimated to have an Intellectual and/ or developmental disability (I/DD). In Washington State, this means that about 82,000 children and adults may have this diagnosis. The current caseload of the Developmental Disabilities Administration (DDA) is approximately 40,000, meaning only half of all people with I/DD seek services from the state. Of this number, more than 14,000 are still waiting for services. Where Do People Live? The majority of people with I/DD live at home with their parents or other relatives. Some adults live on their own or in a group setting with publicly funded in-home and out -of-home support. About 753 individuals on the DDA caseload (2%) live in 4 state-run Residential Habilitation Centers or RHCs. People with the most significant disabilities are being supported in their own homes by family or community service providers. 83,000 people estimated in Washington State with a developmental disability 42,647 clients enrolled with the Developmental Disabilities Administration 28,402 of those clients receive at least one paid service from DDA 14,245 of those clients receive No Paid Services from DDA Prepared by The Arc of Washington State ~ ~

4 Basic Basic Plus Core Community Protection CIIBS IFS 0 Home & Community Based Services (HCBS) Funded Waiver Capacity In the 1980s, the Federal government allowed states to apply for Federal Medicaid funds to pay for home and community based services, referred to as Home and Community Based Services Waiver Program. What a person is waiving is the right to an Intermediate Care Facility (ICF/DD), receiving their services in a community setting instead of the more expensive institutional setting. Basic Basic + Core C.P. CIIBS IFS combined Key Waiver Elements Total Waiver Capacity: 2004: 10, : 10, : 10, : 9, : 9, : 9, : 11, : 11, : 12, : 12, : 12, : 13,338 Average Annual Waiver Expenditure Per Client Basic Plus $28,116 Core $90,975 Community Protection $126,218 CIIBS $59,414 IFS $2,400 Meets ICF/MR level of care guidelines, but does not need out-of home residential services. Includes: employment/day services, respite, therapies, personal care. (Was combined with Basic Plus during 2012.) Meets ICF/MR level of care guidelines, but is at high risk of out-of-home placement or loss of current living situation. Includes: Basic Waiver service coverage, skilled nursing, additional employment/day funding. Meets ICF/MR level of care guidelines. Requires residential habilitation services or lives at home, but is at immediate risk of out-of-home placement. Includes all Basic Plus waiver services, in addition to supportive living services (up to 24 hour supervision and support). Meets ICF/MR level of care and requires 24 hour, on-site, staff supervision to ensure safety of others; requires therapies and/or other habilitation services; meets the criteria for community protection. The Children s Intensive In-home Behavior Supports waiver meets ICF/MR level of care and provides in-home positive behavior supports from qualified from PhD or MA level therapists with intense case management and collaboration with family, school & other service providers. (Created in 2010) The Individual and Family Services waiver meets ICF/MR level of care and provides respite, behavioral health stabilization services, environmental adaptations, therapies, nurse delegation, sexual deviancy evaluations, specialized medical equipment and supplies, and staff/family consultation and training. Data Source: Developmental Disabilities Administration (DDA) as of October 2015

5 Developmental Disabilities Administration (DDA) Budget Allotment for FY 2016 $1,220,235,000 Note: Number of who will receive services in each program is estimated. 83,000 people estimated in Washington State with a developmental disability 42,647 clients enrolled with the Developmental Disabilities Administration 28,402 of those clients receive at least one paid service from DDA 14,245 of those clients receive No Paid Services from DDA Source: Developmental Disabilities Administration (DDA) - November 2015

6 Developmental Disabilities: Overview Funding for DD Services FEDERAL MATCH Nearly all DD service dollars are matched with federal Medicaid funding. Under Title XIX, Medicaid is used to match state funding for: Home & Community-Based Waivers. Services are based on habilitation and support to build and maintain abilities that lead to greater independence. Waiver services include: Employment/Day Services Respite Community Residential Services Therapies Service types and amounts vary by waiver (Basic Plus, Core, Community Protection, Children s Intensive In-home Behavior Supports, and Individual & Family Services). Residential Habilitation Centers: Four state-run institutions for people with developmental disabilities that provide habilitation and health care services to about 730 individuals. Community First Choice (previously Medicaid Personal Care): In-home care services to assist with activities of daily living, such as bathing and dressing. MPC is being transitioned to the Community First Choice program, which provides the state with an additional 6% in matching federal funds. Federal Medical Assistance Percentages (FMAP) are the percentage rates used to determine the matching funds rate allocated annually to certain programs. The FMAP for FY 2015 is 50.00% state and 50.00% federal with the exception of the Community First Choice program. Prepared by The Arc of Washington State ~ ~ December 2015

7 Developmental Disabilities: Overview Department of Social and Health Services NOTE: Dashed boxes indicate non-dd services accessed by some individuals with developmental disabilities. Financial Services Background Checks Economic Services Food Stamps Medical State SSI Supplement Juvenile Justice & Rehabilitation Administration Division of Vocational Rehabilitation Developmental Disabilities Administration Aging & Long Term Support Administration Children s Administration Foster Care Behavioral Health & Service Integration Administration Mental Health State Hospitals Dual Eligibility Home & Community Services Medicaid Personal Care Residential Care Services (Licensing/Certification/Oversight) Supported Living Adult Family Homes Nursing Homes Intermediate Care Facilities Community Based DD Services: Case management/intake (provided by the state) Early Intervention Services for children age birth-3 (state contracts through counties) Home & Community Based Services (HCBS) Waivers: ~ Basic Plus Waiver ~ Core Waiver ~ Community Protection Waiver ~ Children s Intensive In-home Behavior Supports (CIIBS) Waiver ~ Individual & Family Services Employment/Day (waiver service contracted by the state through the counties) Community First Choice program (previously Medicaid Personal Care) Supported Living/Staffed Residential Services (Community Residential, the community-based alternative to institutional care, provided as a Core waiver service) Institutional Care: Fircrest Habilitation Center and Nursing Home Rainier Habilitation Center Yakima Valley Nursing Home Lakeland Village Habilitation Center and Nursing Home Prepared by The Arc of Washington State ~ ~ January 2015

8 People with Developmental Disabilities Where Do They Live? RHC 2% Home RHC Community Residential Home 77% 79% Community Residential 19% IN-HOME Own home (10%) 4,343 Relative (4%) 1,576 Parent s Home (66%) 27,433 TOTAL: 33,352 29,306 live with and receive supports from a parent or other relatives. Approximately 17,013 or 58% of these do not receive any paid services from DDA. COMMUNITY RESIDENTIAL Supported Living (9%) 3,829 Group Homes (1%) 264 Adult Family Homes (4%) 1,686 Child Foster Home/Group Care/Lic. Staff Residential (2%) 985 Alternative Living (1%) 148 Companion Home (1%) 69 Community ICF/DD (1%) 48 Assisted Living Facility (1%) 175 Nursing Facility (1%) 234 State Operated Living Alternative (SOLA) (1%) 129 Correctional Facilities (1%) 46 Psychiatric/Medical Hospital (1%) 42 Homeless/Unknown (2%) 594 TOTAL: 8,241 RESIDENTIAL HABILITATION CENTER (RHC) (2%) Fircrest 194 Rainier 195 Lakeland Village 298 Yakima Valley 66 TOTAL: 753 Source: Developmental Disabilities Administration (DDA) - October 2015

9 2015 DDA Clients Receiving a Paid Service Clients approved for Basic Plus Waiver 2015 DDA Program Caseload Information The Developmental Disabilities Administration (DDA) is divided into Regions 1, 2 and 3, (also separated into North and South). The top chart shows how many clients are enrolled with DDA as of October The chart below that shows the number of children (C) and adults (A) who are on the Waiver Request Lists, those who have requested services from the Voluntary Placement Services program and those on the No- Paid Services (NPS) caseload (qualify, but there is no funding available). Region 1-N Region 1-S Region 2-N Region 2-S Region 3-N Region 3-S Totals 1, ,330 1,979 1,450 1,389 7,846 Clients approved for Core Waiver , ,582 Clients approved for Individual & Family Services Waiver* Clients approved for Community Protection Program Waiver Clients approved for Children s Intensive In-home Behavior Supports (CIIBS) Waiver Total approved for Waivers 1,955 1,343 2,157 3,312 2,267 2,304 13,338 Clients approved for non-waiver DDA paid services 1,499 1,195 1,089 1,982 1,164 1,440 8,369 Children receiving MPC outside DDA Birth to three clients with Child Development Services (CDS) ,142 2,019 1, ,489 Clients in an RHC (long-term stay) Total receiving a paid service 3,988 3,240 4,436 7,595 4,864 4,276 28,402 Clients assigned to NPS caseload 1,408 1,381 2,272 3,770 2,072 1,919 12,822 Birth to three clients without CDS ,423 Total of NPS clients 1,571 1,381 2,562 4,406 2,164 2,030 14,245 Total clients enrolled with DDA 5,559 4,621 6,998 12,001 7,028 6,306 42, DDA Request Lists (and other clients waiting for services) Region 1-N Region 1-S Region 2-N Region 2-S Region 3-N Region 3-S Basic Plus Waiver Core Waiver Community Protection Program Waiver (CIIBS) Waiver Individual & Family Services Waiver* Waiver Request Sub-total Individual and Family Services (SO)* ,365 Voluntary Placement Services Total Clients on a DDA Request Lists (Waiver and Non-waiver) Totals ,745 * The IFS program was a state-only funded service until April 2015 when the IFS Waiver was created. Clients are being re-assessed and those eligible are being placed on the IFS waiver. Data from Developmental Disabilities Administration (DDA) as of October Children are age birth through 17.

10 County Developmental Disabilities Administration (DDA) NO PAID SERVICE/WAIT LIST CLIENTS (By County) HCBS Waiver Request List Individual and Family Services (IFS) Wait List High School Graduates FY 2016 FY 2017 Persons age on a waiver, but not in an employment/ day program Persons age not on a waiver, not funded for employment/day Data from Developmental Disabilities Administration (DDA) as of October 2015 Senior Families Persons age 40 + living with parents Adams Asotin/Garfield Benton/Franklin Chelan/Douglas Clallam Clark Cowlitz Ferry Grant Grays Harbor Island Jefferson King , Kitsap Kittitas Klickitat Lewis Lincoln Mason Okanogan Pacific/Wahkiakum Pend Oreille Pierce , San Juan Skagit Skamania Snohomish Spokane , Stevens Thurston Walla Walla/Columbia Whatcom Whitman Yakima TOTALS 348 2, ,645 11,

11 $20, $18, $16, $14, HCBS Waivers and RHC Placement 2015 Average Monthly Cost Per Client (Home and Community Based Services Waivers) $18, $12, $10, $8, $6, $4, $2, $- $2,343 7,846 $7,581 4,582 $10, $4, $300 Basic Plus Core Community Protection CIIBS IFS * RHC * Individual & Family Services (IFS) state-only program clients are currently being transferred to the new IFS waiver. IFS allotments range from $1,200 $3,600 per year, the average at the high end being $300 a month Average Daily Cost Per Client by Setting $1,800 $1,600 Adult Settings Children s Settings $1,636 $1,400 $1,200 $1,000 $800 $600 $400 $200 $652 $576 $637 $600 $434 $420 $406 $467 $253 $207 $183 $58 $ $149 $0 Fircrest Fircrest Rainier Lakeland Yakima SOLA 11 SOLA 1 SOLA 2 2 SOLA 3 Supported DDA Companion Adult Licensed Voluntary Foster Foster Home Home Community Village Valley North South South North Living Group Home Family Staffed Staffed Placement Group Group Care Crisis Home Home Residential Services Care Stabilization Note: Average daily cost for adult settings is based on clients whose range of support needs is similar based on their last CARE assessment. Federal matching rate is approximately 50% for 2015 for all settings. Only costs expended by Developmental Disabilities Administration (DDA) are calculated here. Data from Developmental Disabilities Administration November 2015