DEPARTMENT OF ECONOMIC SECURITY DIVISION OF DEVELOPMENTAL DISABILITIES FAMILY SUPPORT ANNUAL REPORT July 1, 2008 - June 30, 2009 DIVISION OF DEVELOPMENTAL DISABILITIES CREDO To support the choices of individuals with disabilities and their families by promoting and providing within communities, flexible, quality, consumer-driven services and supports. Individuals with developmental disabilities are valued members of their communities and are involved and participating based on their own choices. VALUES We Value: 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. Healthy relationships with people; Individual and family priorities and choices; Equal access to quality services and supports for all individuals and families; Partnerships and ongoing communication with individuals, family members, advocates, providers, and community members; Developmental approaches – changing conditions that affect people rather than changing people who are affected by conditions; Individual freedom from abuse, neglect and exploitation with a balance between the right to make choices and experience life and individual safety; A diverse workforce that is motivated, skilled and knowledgeable of and uses the most effective practices known; An environment rich in diversity in which each person is respected and has the opportunity to reach their optimal potential; An individual’s right to choose to participate in and contribute to all aspects of home and community life; and A system of services and supports which are: • Responsive – timely and flexible responses to internal and external customers; • Strength based – recognizing people’s strengths, promoting self-reliance, enhancing confidence and building on community assets; • Effective – ongoing identification of effective methods and practices and incorporation of those practices into operations; and • Accountable – to our customers and to the taxpayers. THE KEY TO OUR SUCCESS EXCEEDING THE EXPECTATIONS OF OUR CUSTOMERS Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 I. Introduction In 1993, Family Support Legislation was passed that defined a family support program for people with developmental disabilities and their families, subject to funding appropriations. This legislation was a result of collaboration with families, advocacy organizations, providers of services, and the Division of Developmental Disabilities (Division) in recognition of the significance of family support as a national initiative. While there is no appropriated funding for a family support program in Arizona, the Division integrates the philosophy of the legislation into its activities as indicated in the Mission, Vision, and Values. This Annual Report highlights initiatives and systems that the Division and many collaborators have successfully implemented. It also describes the number of people supported and the ways in which they are supported. Family support is defined as services, supports and other assistance that are provided to families with members who have a developmental disability and that are designed to: ¾ ¾ ¾ ¾ ¾ II. Strengthen the family’s role as a primary caregiver; Prevent inappropriate out-of-home placement; Maintain family unity; Reunite families with members who have been placed out of home; and Include respite care, assistive technology, appropriate personal assistance services, parent training and counseling, vehicular and home modifications and assistance with extraordinary expenses associated with the needs of a person with a developmental disability. Overview of the Division of Developmental Disabilities The Division of Developmental Disabilities within the Arizona Department of Economic Security provides services and programs to 30,262 people with developmental disabilities as of June 30, 2009. The Division believes that people can best be supported in integrated community settings and the majority of the Division’s programs and services are tailored to meet the individual needs of people with developmental disabilities and their families at home and in community-based settings. The Division coordinates services and resources through central administrative offices, six district offices and 49 local offices located in communities throughout Arizona. These district and local offices promote the use of existing community resources and program flexibility to meet the needs of individuals with developmental disabilities and their families. While a few services are delivered directly by the State, most services and supports are delivered through a network of individual and agency providers throughout Arizona. 2 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 To be eligible for Division services a person must be an Arizona resident and have a chronic disability, which is attributable to a cognitive disability, cerebral palsy, epilepsy or autism that is manifested before the age of 18. The disability must also result in substantial functional limitations in three or more of the following areas of major life activities: ¾ ¾ ¾ ¾ ¾ ¾ ¾ Self care: needing help with eating, hygiene, etc. Receptive and expressive language: needing help with communicating with others Learning: needing help with acquiring and processing new information Mobility: needing help with moving from place to place Self direction: needing help with managing personal finances or making decisions Capacity for independent living: needing supervision or assistance on a daily basis Economically self sufficient: not being financially independent Infants and toddlers under the age of six years may be eligible for services if they exhibit a significant delay in one or more areas of development or, for children under the age of three, are determined to be at risk without services. The following chart shows the breakdown of eligible individuals by primary disability as of June 30, 2009: People Served by Primary Disability At Risk Other, 127 Cognitive Disability, 13400 At Risk, 8786 Cerebral Palsy Epilepsy Autism, 3920 Epilepsy, 1190 Autism Cerebral Palsy, 2839 Cognitive Disability Other 3 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 The Division supports people of all ages. The following chart shows the breakdown of eligible individuals by age as of June 30, 2009: Ages of People Served 55 and up, 1352 0 to 3, 3397 21 to 55, 9043 3 to 6, 4687 0 to 3 3 to 6 6 to 18 18 to 21 21 to 55 18 to 21, 1663 6 to 18, 10120 55 and up The Division provides services through two primary funding sources: State funded services and the Arizona Long Term Care System. State funded services cover individuals who meet the statutory criteria described above. State funded services for those over the age of three can only be provided to individuals with developmental disabilities up to the Division’s legislative budget appropriation. There is often a waiting list to receive these services after the age of three. The types of services provided are listed in Section III of this report. Individuals with developmental disabilities who are eligible for services through the Division may also be eligible for services through Arizona Long Term Care System (ALTCS). The Arizona Health Care Cost Containment System determines eligibility for Long Term Care Services through a review of the person’s service needs and financial eligibility. The Arizona Long Term Care System is the Medicaid Title XIX program for persons with developmental disabilities who meet the ALTCS eligibility criteria. The Arizona Long Term Care System provides long term and acute care services to individuals with developmental disabilities who are at risk of institutionalization. It is a research and demonstration program approved through the Federal Centers for Medicare and Medicaid Services and is intended to illustrate that home and community-based services and a managed care approach are more cost effective than institutionalization. Long term and acute care services are bundled under a single system of support in order to coordinate and enhance service delivery. These services are based on assessed needs. 4 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 The following chart shows the breakdown of eligible individuals by funding source as of June 30, 2009: People Served by Funding Source DD, 8451 DD ALTCS ALTCS, 21811 The Division provides most of its service through a statewide network of profit and non-profit agencies (Qualified Vendors) and individual providers. Services are provided based on the person’s identified needs, state and/or federal guidelines and, when applicable, the availability of funds. See Section V for the number of providers. III. Services and Supports Services generally fall into broad categories as follows: ¾ Case management (support coordination) People receive assistance from a support coordinator (case manager) in determining eligibility, assessing needs, and obtaining services and supports. Case managers: ¾ Gather information to help determine eligibility; ¾ Develop, with ideas and suggestions from the person and their family, an Individual Service/Support Plan that identifies the supports and services needed; ¾ Assist the person and family in obtaining the needed services and supports; ¾ Monitor the provision and effectiveness of services; and ¾ Provide information about services available from other state and community agencies as well as from private organizations. 5 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 Targeted Support Coordination is an option for people who are eligible for health care through the Arizona Health Care Cost Containment System (AHCCCS), but are not eligible for ALTCS. This option allows the individual/responsible person to determine the frequency and type of contact he/she wants from the support coordinator. This program does not provide for the other services covered by Long Term Care such as respite, habilitation, etc. People who are eligible for Medicaid but not eligible for Long Term Care are eligible for Targeted Support Coordination. Many services are available to both people who are eligible for the Arizona Long Term Care System and to people who only qualify for the state funded developmental disability services. The Developmental Disabilities (DD) State-Funded program offers essentially the same services as does the Arizona Long Term Care program except for acute and behavioral health services. An asterisk (*) indicates services that are for Arizona Long Term Care members only. ¾ Augmentative Communication Devices (devices that help a person communicate like a notebook, communication board, or computer system. Each device is individualized to a person’s specific needs and strengths) ¾ Attendant Care (help with personal care and housekeeping) ¾ Day Services - Day treatment and training (training, supervision, therapeutic activities, and support to promote skill development in independent living, self care, communication, and social relationships. Services can be provided in both congregate and individual community settings.) ¾ Early Periodic Screening, Diagnosis and Treatment Services (EPSDT)* ¾ Employment Services - Supported work programs ¾ Environmental modifications (building modifications to allow an individual to function as independently as possible in their own home) ¾ Habilitation (interventions such as habilitative therapies, special developmental skills, behavioral intervention, sensory-motor development designed to increase the person’s skills and functioning) ¾ Habilitative Therapy (occupational therapy, physical therapy, and speech) ¾ Health Plan Services (acute care)* ¾ Homemaker (help with housekeeping) ¾ Home health aide (health maintenance, continued treatment or monitoring of a health condition and supportive care with activities of daily living)* ¾ Home Health Nurse (skilled nursing services)* ¾ Hospice (care for individuals who are terminally ill)* ¾ Behavioral Health (care and treatment for people with behavioral health needs such as crisis services, evaluation and diagnosis, counseling, behavioral health rehabilitation, transportation, respite, medication, psychiatric medication adjustment and monitoring, psychiatric medication adjustment, and monitoring or in patient hospital services)* ¾ Residential Services (see section IV) ¾ Transportation ¾ Respite Care (short term care and supervision to provide relief to the caregiver) Information about children’s services can be found in Section VI. 6 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 IV. Residential Options The Division provides services in a variety of living environments, the vast majority of which are community based. Most services are provided in the family or person’s home. Opportunities are provided for people to choose a place to live, with necessary supports, within their home communities such as receiving services to live within the family home, living in one’s own home or apartment, living in an adult developmental or child developmental home or residing in a small group home. When residential services are needed, the following options are available: Individually Designed Living Arrangement - This service provides for an alternative, nonlicensed residential living situation for consumers to choose where and with whom he/she will live and assume all responsibility for his/her residence. Generally, one or more consumers reside together in a private residence that is leased or owned by the consumer(s) and/or the consumer(s) representative(s). The focus of this service is to provide teaching supports (habilitation) to individuals based on the collective need for support to eligible consumers who have chosen to reside together and share their resources. Adult Developmental Home - A residential setting for adults that is licensed to provide room, board, supervision, and teaching (habilitation) for up to three people. Child Developmental Foster Home - A residential setting for up to three children that is licensed to provide supervision, teaching (habilitation) and room and board for children who have been adjudicated dependent by the court. The long-term goal is to move the children out of foster care into a permanent home. There are children, not involved in the foster care system, that receive residential foster home services outside of their family home. Group Home - A community residential setting for up to six people that provides supervision, habilitation, room and board. The group home provides a safe and homelike atmosphere, which meets the needs of individuals who cannot physically or functionally live independently in the community. Rarely does a person need a more intensive residential setting. For those individuals, the following facilities may be accessed: Nursing facility - A Medicaid certified facility, which provides inpatient room, board and nursing services to individuals who need them on a continuous basis but do not require hospital care or direct daily care from a physician. Intermediate Care Facility for the Mentally Retarded - A facility whose primary purpose is to provide health, habilitative, and rehabilitative services to people who require them on a continuous basis. 7 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 The following chart shows the breakdown of eligible individuals by residence as of June 30, 2009: People Served by Residence Developmental Home, 905 Group Home, 2486 Institution, 226 Own or Family Home Institution Group Home Developmental Home Own or Family Home, 26645 V. Provider Network The Division provides most of its service through a statewide network of profit and non-profit agencies (Qualified Vendors) and individual providers. Home and Community-Based Providers Agencies (Qualified Vendors) Adult Developmental Homes Child Developmental Homes Individual Providers VI. # of Contracts 816 584 306 3,356 Additional Services for Children Children from birth to three years of age, who have a developmental delay and who are eligible for services though the Division may also be eligible for services through the Arizona Early Intervention Program and through the Arizona Long Term Care System. The plan developed includes the necessary outcomes to enhance the child’s development and the capacity of the family and service providers to meet the specific support needs of the child. Division funded services may include special instruction, therapies, service coordination, health services or assistive technology devices and services. As of June 30, 2009, 4,687 children are eligible for services through the Arizona Early Intervention Program. 8 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 VII. Acute Care Health Plan Services The Division currently holds contracts with four health plans that together provide services to Arizona Long Term Care Systems members with developmental disabilities residing in every Arizona county. The health plans are responsible to assign or allow choice of a primary care provider to each person who is enrolled. The health plans are: ¾ ¾ ¾ ¾ Arizona Physicians Independent Physician Association (APIPA) Mercy Care Capstone Care First The Division also coordinates with Indian Health Services for children and adults who are tribal members. VIII. Other Division Activities that Support Arizona’s Families In addition to the supports and services noted above, the Division strives to provide other supports to consumers and families. Some of these are as follows: ¾ The Division’s website is constantly changing to provide information to consumers and families. It provides information about the Qualified Vendor program (how the Division contracts for services), the Fiscal Intermediary program (the network of independent providers) and how to work with providers. It also contains Division laws, rules, policies, and forms. Many of the Division’s publications are available such as Navigating the System (a handbook for consumers and families), the ALTCS Member Handbook, DDD Working with You and others. The website also has a referral feature for people who would like to apply for eligibility determination. ¾ The Division supports councils and family groups. Some of these are the Developmental Disabilities Advisory Council (a governor appointed Council that is advisory to the assistant director), the Self-Determination Advisory Council (a consumer advisory group to the Division), FACT groups (Families Actively Communicating Together – a parent driven group that provides support and learning opportunities) and specialized groups for autism, Down Syndrome and groups for families who speak Spanish. ¾ The Division has a policy review group that provides input on all policy revisions. These revisions are then presented to the Developmental Disabilities Advisory Council, the Self-Determination Advisory Council, as well as families and consumers, so they can provide input in policy development and/or revision. Draft revisions are also posted on the Division’s website to allow for universal access and input to policy revisions. 9 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 ¾ All new support coordinators go through a three week training course known as Core Training. Trainers include consumers, families, and Division staff. This training teaches support coordinators the philosophy of the Division and provides the foundation for further on-the-job training. ¾ The Division provides support to Human Rights Committees throughout the state. These committees are comprised of local volunteers who provide independent oversight in matters related to the rights of people with developmental disabilities such as incidents of abuse, neglect, or exploitation. ¾ The Division provides support to Program Review Committees across the state. These volunteer committees review every proposed behavior treatment plan to make sure they are properly written, include positive strategies and do not violate people’s rights. ¾ The Division’s quality management system includes the Risk Incident Management System which is the automated system for incident reporting. The purpose of incident management is to assist in promoting the health, safety, and welfare of people with developmental disabilities through active reporting, investigating, tracking and trending of incidents and the implementation of both individual-specific and systemic corrective actions and prevention strategies. It also includes residential monitoring of roughly 1,000 group homes every six months for compliance with programmatic standards. The Consumer Resolution Tracking System is an automated system used to track consumer concerns and complaints and to describe the resolution of the issue. Staff are able to look for patterns of concerns so there can be systemic resolution. IX. A Snapshot of 2009 Accomplishments In partnership with consumers, families, and community stakeholders, the Division continues to support innovations and improvements. Some of achievements are as follows: ¾ The Division continues on a three year grant from the Centers for Medicare and Medicaid Services to prepare youth who are in transition from school to adult living to exercise choice, promote the use of informal and community supports and to make knowledgeable decisions on their living arrangements, work, social networks and services. ¾ Twenty people with developmental disabilities and family members graduated from Partners in Policymaking; an innovative leadership training program that teaches people to be community leaders and to affect systems and policy change at the local state and national levels. Participation in the program requires a concerted effort on the part of the graduates over a seven month period. Partners graduates gain the ability to teach policymakers a new way of thinking about people with developmental disabilities. 10 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 ¾ The Division partners with the Sonoran University Center of Excellence in Developmental Disabilities (UCEDD) on a project to describe and address barriers to effective late life transitions for aging caregivers of adults with developmental disabilities. The project also promotes effective late life transitions for people with developmental disabilities as well as improving aging related and end of life care for people with developmental disabilities. ¾ The Division is a partner in Arizona’s Aging and Disability Resource Center whose goal is to create a coordinated system of information, assistance and access for all people seeking long term care services. This system known as AzLinks includes a web site (www.azlinks.gov) that provides links to many federal, state, and other agencies integrating resources on a variety of relevant topics. AzLinks also has a reference manual for people who do not have access to the internet. ¾ The Division continues to participate in the national Core Indicators Project a project that measures the satisfaction with supports and services provided to people with developmental disabilities and their families. Preliminary data for fiscal year 2009 show a consistent level of satisfaction since 2000. Based on the information generated by this survey, the Division chooses an area to work on. The Division is focusing on alleviating loneliness through increasing self-advocacy. Each District has a Consumer Advisory Council which will advise the District on ways to assist consumers in becoming selfdetermined advocates. X. Success Statistics: The Division’s Strategic Plan measures how well the Division is following its mission. Following are some of the results in the plan: ¾ 92 foster children with special needs were adopted. ¾ 100 percent of families were satisfied with Applied Behavioral Analysis services. Applied Behavioral Analysis is a structured teaching method that takes what is known about a person’s behavior and uses it to bring about a positive change. ¾ 5,698 people participated in a day program, work center, group or individual supported employment programs. ¾ 4,744 people selected an individual provider of their choice and participated in the fiscal intermediary program. This allows people to use a combination of individual providers or individual providers and agencies. ¾ 265 families used Cooperatives, Microboards or Support Brokerage models. These are different options for choosing and arranging supports and services. 11 of 12 Department of Economic Security/Division of Developmental Disabilities Family Support Annual Report, July 1, 2008 – June 30, 2009 ¾ 210 physical therapists, 244 occupational therapists and 325 speech therapists provide services to people with developmental disabilities. ¾ 1,403 individuals/families chose to use contracted support coordinators. People can choose between state staff or contracted support coordinators. ¾ Satisfaction with a Division support coordinator is at 98 percent. ¾ 89 percent of consumers live with their family or in their own home. XI. Conclusion The Division is proud to be a leader for its support of individuals and families and continuously seeks to improve its system of supports for consumers and families. The Division will continue to recruit additional therapists through advertising in state and national trade journals. Staff will be updating the Qualified Vendor System including revising the service descriptions and expectations of the services. The Division will engage consumers and families to provide valuable ideas on how services should look. With the Developmental Disabilities Advisory Council, the Division will explore new ways to receive input from people with developmental disabilities and their families on how to improve the service delivery system. The Division will actively pursue additional employment opportunities for people with developmental disabilities. The Division looks forward to collaborating with the community, stakeholders and other entities to continue providing quality supports and services in the most inclusive ways and settings. 12 of 12