Promoting Independence, Dignity and Quality of Life for Persons with Disabilities in Central Indiana

CICOA Aging & In-Home Solutions 4755 Kingsway Drive Suite 200 Indianapolis, IN 46205 317-254-5465 www.cicoa.org

The Challenge Contents The Challenge ..................................... 2 Background on Waivers .................... 3 CICOA’s Unique Role ......................... 3 CICOA’s Services ............................... 4 Caregiver Timeline ............................. 7 Affiliate Agencies................................ 8

One person in five will experience a disability during his or her lifetime that will make some activity of daily living difficult.

Background on Waivers In the early 1980s a growing national trend moved away from institutional care for the elderly and persons with disabilities in favor of providing home and community-based services.

CICOA’s Clients .................................. 8

CICOA’s Unique Role

Case Studies ..................................... 11

As the state’s largest Area Agency on Aging, CICOA Aging & In-Home Solutions is the premier source of information and access to resources for seniors and persons with disabilities living in Central Indiana.

Every Gift Helps ................................ 12

CICOA’s Services CICOA provides a number of in-home services that help enable our clients to remain at home.

Caregiver Timeline Caring for a person with disabilities can be challenging. However, there are steps you can take that will make the job easier.

Affiliate Agencies CICOA services are provided through a network of agencies, volunteers and service groups.

CICOA’s Clients During the Fiscal Year 2009 (July 1, 2008 - June 30, 2009), CICOA served 15,827 clients, representing 6.5 percent of the senior population in Central Indiana, and roughly 7.6 percent of the population under the age of 60 with disabilities.

Every Gift Helps The benefit of private funding through CICOA’s Client Assistance Funds and unrestricted gifts is that it offers flexibility to find the solutions clients need to help them remain at home.

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The Challenge The disabilities population is a one that a person can enter at any time in his or her life. Some are born with a birth defect; others are diagnosed with a developmental disability in childhood; and others enter the population through traumatic injury or age-related concerns. Birth Defects: One in every 33 children born in the United States each year has a birth defect, according to the Centers for Disease Control. Birth defects can cause lifelong problems with growth and learning and increase the likelihood of childhood morbidity, illness or long-term disability. Developmental Disabilities: People with developmental disabilities may be diagnosed anytime during development up to 22 years of age with a severe, chronic condition that results in substantial limitations in three or more of the seven areas of major life activity. These major life activities include self-care, language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency. Traumatic Injuries: There is no national registry on traumatic injuries. However the most common causes of physical trauma leading to hospitalization include motor vehicle accidents, falls, gunshot, physical violence, poisoning and near drowning. Each year in the United States, roughly 99,000 people suffer a Traumatic Brain Injury (TBI) that results in a lasting disability. People between the ages of 15 to 24 have the highest risk of TBI, followed by people aged 60 or older. The most common causes of TBI are motor vehicle accidents, sports/physical activity, assaults and falls. TBI often results in life-long physical, emotional, and financial changes for the survivor. Statistics indicate that one in five people will experience a disability during his or her lifetime that will make some activity of daily living difficult. These basic activities of daily living include eating, dressing, getting in or out of bed or a chair, taking a bath or shower, and using the toilet. Other activities commonly related to independent living include preparing meals, managing money, shopping, doing housework, and using a telephone. In Central Indiana—comprised of Boone, Hamilton, Hancock, Hendricks, Johnson, Marion, Morgan and Shelby counties—the number of people living with disabilities age five and over who are NOT in institutional care is roughly 250,000 people, or 17 percent of the population. (See Table 1, page 8.)

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When such a disability occurs, many people prefer to continue living as independently as possible in their homes and communities rather than moving to institutional care. This choice allows them, with the support of caregivers and community resources, to continue in a familiar, comfortable environment and to be productive members of society—to work, to enjoy their families and friends, and to live with some level of freedom and independence. This choice also can prove to be more cost effective than hospitalization or institutional care. Background on Waivers In the early 1980s a growing national trend moved away from institutional care for the elderly and persons with disabilities in favor of providing home and community-based services. In response, a new Medicaid program “waived” the federal requirement that services be provided in an institution. This allowed Medicaid recipients to receive nontraditional in-home and community-based services, so long as the cost was comparable. Indiana began offering Medicaid Waivers in 1986 using federal and matching state dollars and today has two categories of waivers. The first, known as Medical Model Waivers, are for children and adults with medical needs and includes the Aged and Disabled Waiver (A&D) and the Traumatic Brain Injury Waiver (TBI). The second category, known as Developmental Disabilities Waivers, are for children and adults with intellectual or other developmental disabilities and includes the Autism Waiver, the Developmental Disabilities Waiver, and the Support Services Waiver. Waivers are used to pay for services from qualified providers of attendant or nursing care services, home modifications (ramps), lifts for vehicles, residential and employment supports, etc., and are intended to help people with disabilities continue to live in their homes and communities instead of being moved to institutional care. Every state has a maximum number of slots for Medicaid waivers it can grant in a given year, filled on a first-come, first-served basis. Clients must meet eligibility requirements each year to continue receiving Medicaid and Waiver services. Around the same time that Indiana began offering Medicaid Waivers, it also developed the CHOICE program. CHOICE, an acronym for Community and Home Options for Institutional Care for the Elderly and Disabled, is a state-funded program under the Division of Aging that provides support to both the elderly and people of any age with a disability to help them live at home or in community-integrated settings. CICOA’s Unique Role As the state’s largest Area Agency on Aging, CICOA Aging & In-Home Solutions is the premier source of information and access to resources for seniors and persons with disabilities living in Central Indiana. CICOA’s mission is to help enable older persons and those of any age with a disability to enjoy the greatest possible independence, dignity 6/2/2010

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and quality of life. Through a network of agencies, service groups and volunteers, CICOA provides home care services including personal home care, home-delivered meals, home health care, senior transportation services, respite care and caregiver assistance. Established in 1974 by an amendment to the 1965 Older Americans Act, CICOA is a notfor-profit organization governed by a volunteer board of directors. CICOA celebrated 35 years of service in 2009. In Central Indiana, CICOA is the single point of entry for people seeking Medicaid Medical Model Waivers or CHOICE funds. Access to Medicaid Waivers depends on the type of waiver sought and the individual’s eligibility for services. Medical Model Waivers are administered by the Area Agencies on Aging, which means that access to waiver services are initiated through CICOA’s case management program. Developmental Disability Waivers are initiated through the local Bureau of Developmental Disability Services. To be eligible for Medical Model Waivers, the individual must meet Medicaid requirements and be at risk of institutionalized care. A CICOA case manager will visit the potential client and determine whether the individual is eligible to receive services based on income, level of impairment and the availability of funds. For children with disabilities under the age of 18, parental income and resources are NOT counted when determining financial eligibility. Once the Medicaid Waiver intake process is complete, ongoing case management can be handed off to an independent case manager if the client so chooses. However, the Area Agencies on Aging are the only entities in the state that have access to the CHOICE funds, which are 100 percent state dollars. So in Central Indiana, CICOA is the only overseer or steward of that funding source. CICOA’s Services CICOA provides a number of in-home services that help enable our clients to remain at home rather than in institutional care. These services include:  Access to information and resources  Care management  Advocacy  Nutrition  Caregiver support  Lifelong Living Communities  Indy Creative Aging Web site Access to Information and Resources The Aging and Disability Resource Center (ADRC) is a one-stop source of information and assistance for older adults, persons with a disability, their caregivers, families and 6/2/2010

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friends. The ADRC serves as the point of entry for persons seeking assistance through public programs such as CHOICE and Medical Model Waivers. It also provides counseling (regardless of income) about options for long term care and services including caregiver support programs, assisted living centers, transportation and other services. In addition, the ADRC offers State Health Insurance Assistance Programs (SHIP) counseling. This program specifically addresses questions about Medicare, Medicare Supplement Insurance, Medicare Managed Care Plans, Medicaid, long-term financing options and prescription coverage. ADRC services are available at no charge. An average of 4,000 calls are made to the ADRC monthly, and more than 7,000 individuals access information each month through the agency’s Web site. The staff also provides outreach through health fairs, employer benefits fairs, participation in community events and home visits. Care Management CICOA's care managers are professionals with degrees in social work, psychology, sociology, gerontology and nursing. They assess personal care needs during at-home visits and coordinate the needed services into a care plan. Care plan services may include such things as adult day care, homemaker, respite care, attendant care, home health aide, home-delivered meals and home modifications. CICOA's care managers have a long history and expertise with available programs and services for people with disabilities. That wasn’t always the case. Until Indiana began offering Medicaid Waivers in the late 1980s, CICOA served primarily the elderly population. When CICOA began serving younger people with disabilities, case managers realized that clients can take a more active role in managing their own health, often serving as a partner in care management. In addition, family members and other caregivers participate in this planning whenever possible. Once a plan is developed, the care manager arranges for the needed services to be delivered and provides continuous support, monitoring the needs and progress of the client and adjusting the care plan as needs change. Advocacy As participants in the Home Care Task Force and a member of The Indiana Association of Area Agencies on Aging (IAAAA), CICOA advocates for quality programs and services for older adults and persons of all ages with disabilities. CICOA care managers also perform an advocacy role as a routine part of normal care management activities. For example, if a younger client has difficulties at school because an Individualized Education Plan is not being implemented properly, the care manager may attend meetings on behalf of the client. Care managers might also make referrals to other organizations—such as Protection and Advocacy or About Special Kids—to advocate for appropriate services.

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Nutrition The goal of Meals and More, CICOA’s nutrition program, is to provide seniors and persons of any age with a disability with a hot, nutritious meal Monday through Friday. Additionally the program offers individual nutrition assessments, nutrition counseling, group and individual nutrition education, and outreach. To receive home delivered meals an individual must be: - At least 60 years of age; or - The spouse of someone age 60 years of age; or - Under the age of 60 with a disability and receiving services through any of the following funded programs: CHOICE, SSBG, or Medicaid Waiver. The program is designed for persons who are predominately homebound and have difficulty with access to food. Meals are provided on a donation basis with a suggested donation of $2.00 per meal. No person is denied due to an inability to contribute, and all donations are used to provide meals to those in need. Caregiver Support CICOA’s Elder Solutions program helps caregivers over the age of 60 find the information and services needed to help their loved ones live fuller lives in the comfort of their homes. In addition, CICOA’s respite services—through adult day centers, in-home assistance and respite care—help give caregivers a break from the responsibilities of caring for loved ones. Last year more than 100 families were supported through this program. Lifelong Living Communities CICOA’s Lifelong Living Communities initiative works with older homeowners and local communities to help seniors “age in place.” Charitable support provides funding for home modifications, such as the installation of ramps, bathroom renovations and other safety measures that allow people to continue living safely and comfortably in their home. CICOA targets neighborhoods that have high population densities of older residents, referred to as NORCs, or Naturally Occurring Retirement Communities. Over the last two years, CICOA has provided 60 home modifications for low-income elderly Indianapolis residents. Home modifications for people with disabilities under the age of 65 are available through CHOICE and Medical Model Waivers. Indy Creative Aging As part of our commitment to engaging older adults in the community, CICOA sponsors www.indycreativeaging.org, a Web site that lists opportunities in arts, education, community service and recreation for persons ages 50 years and older. The site receives more than 5,000 visitors monthly. Utilization of Services Annually CICOA provides in-home care management to more than 3,000 people, delivers more than 515,000 nutritious meals to homes and 34 neighborhood sites, and 6/2/2010

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offers respite care and supplemental services to 1,500 caregivers. CICOA’s Aging & Disability Resource Center handles more than 44,000 calls per year from people seeking assistance with aging and disability issues. Of the numerous outreach programs offered by CICOA, the services most utilized last fiscal year by clients under the age of 18 with disabilities were case management, attendant care, respite care, assistive technology and skilled nursing. Caregiver Timeline Caring for a person with disabilities can be challenging, whether the individual is born with a disability, is diagnosed in childhood, or sustains it through traumatic injury or age. However the disability occurs, there are steps caregivers can take that will make the job easier. Whenever possible, caregivers should look for ways to engage his or her loved in decisions regarding their care.

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Affiliate Agencies CICOA services are provided through a network of agencies, volunteers and service groups. Partnership agencies and organizations include:  About Special Kids  Department of Education, Division of Exceptional Learners  Division of Aging—Family and Social Services Administration (FSSA)  Division of Disability and Rehabilitative Services (FSSA)  Family to Family  Family Voices  Governor’s Council for People with Disabilities  Office of Medicaid Policy and Planning (FSSA)  The Arc of Indiana  Home Care Task Force CICOA’s Clients CICOA serves Boone, Hamilton, Hancock, Hendricks, Johnson, Marion, Morgan, and Shelby Counties, where more than 20 percent of Indiana's population lives. As noted earlier, in Central Indiana the number of people with disabilities ages five and over who are not in institutional care is roughly 250,000 people—or 17 percent of the population. Table 1—Percentage of Population with Disabilities* *in the civilian non-institutionalized population, based on U.S. 2000 Census Data, National Institute on Disability and Rehabilitation Research

Age 5-15

County Boone Hamilton Hancock Hendricks Johnson Marion Morgan Shelby

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Total Pop. 46,107 182,740 55,391 104,093 115,209 860,454 66,689 43,445

Total with Disability, Age 5 and Over* 8,668 19,330 8,693 15,871 18,950 157,908 12,234 8,545

Total 394 1,647 529 656 906 9,492 607 360

% of Pop: 0.93% 0.70% 1.03% 0.70% 0.86% 1.21% 0.99% 0.89%

Age 16-20 % of County Age Cohort 4.72% 4.78% 5.65% 3.62% 4.77% 7.06% 5.46% 4.91%

Total 444 1,153 404 769 1,102 7,851 750 365

% of Pop. 1.05% 1% 0.78% 0.82% 1.04% 1% 1.22% 0.91%

% of County Age Cohort 16.30% 12.30% 12.40% 12.60% 14% 14% 16.50% 13.10%

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Age 21-64

County Boone Hamilton Hancock Hendricks Johnson Marion Morgan Shelby

Total 6,030 12,134 5,440 10,820 11,690 101,315 7,804 5,683

Age 65-74:

% of Pop. 14.30% 7.37% 10.60% 11.50% 11.10% 12.90% 12.70% 14.20%

% of County Age Cohort 23.10% 11.20% 16.60% 18% 17.50% 20.10% 20% 22.80%

Total 813 1,886 1,143 1,716 2,257 17,786 1,570 894

% of Pop. 1.93% 1.14% 2.23% 1.83% 2.14% 2.26% 2.56% 2.23%

age 75+ % of County Age Cohort 29.90% 25% 31.60% 31.30% 34.90% 35.90% 38.90% 32.80%

Total 987 2,510 1,177 1,910 2,995 21,464 1,503 1,243

% of Pop. 2.35% 1.52% 2.29% 2.04% 2.85% 2.73% 2.45% 3.10%

% of County Age Cohort 46.20% 46.60% 50.70% 48.80% 57.30% 53.10% 56.10% 54.60%

Of that population, during the Fiscal Year 2009 (July 1, 2008 - June 30, 2009) CICOA served 15,827 clients, representing 6.5 percent of the senior population in Central Indiana and roughly 7.6 percent of the population with disabilities under the age of 60. Table 2—Community Profile Fiscal Year July 1, 2008-June 30, 2009

Age Under 12 12-17 18-29 30-49 50-64 65-84 85+ Total Clients Served:

# Clients 458 225 354 816 2284 7160 4530 15,827

Percentages 3 1 2 5 14 45 29

Table 3—Age Breakdown of Current Clients: *Does not include non-care managed Title III Home-delivered Meals Clients.

AGE

CHOICE

SSBG/T3

Medicaid Waiver: Aged & Disabled

0-18 19-59 60-64 65-84 85+ TOTAL

72 204 84 433 248 1041

0 32 53 284 171 540

480 704 145 886 381 2596

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Medicaid Waiver: Traumatic Brain Injury 13 23 1 2 0 39

Unduplicated Total

505 857 209 607 3384

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For children with disabilities younger than three years of age, funding for services is available through Indiana's First Steps, a family-centered, locally-based, coordinated system that provides early intervention services to infants and young children with disabilities or who are developmentally vulnerable. CICOA’s role in serving people with disabilities involves primarily physical rather than developmental disabilities, although our clients may have both. Anyone seeking Medical Model Waivers—whether the Age and Disabled Waiver or the Traumatic Brain Injury Waiver—must apply through CICOA. CICOA’s clients typically have medically complex cases with multiple health issues. The most common, primary disabilities noted among CICOA’s adult clients, ages 18-64, in the last fiscal year were cerebral palsy, multiple sclerosis, quadriplegia, traumatic brain injury and cerebral infarction. The most common, primary disabilities among CICOA’s clients under the age of 18 were cerebral palsy, autism, seizures, muscular dystrophy and Down syndrome. Table 4—Primary Disabilities of Current Clients, ages 18-64 Disabilities Accidents Brain/Spinal Cord Autism Bipolar Disorder Brain Damage COPD CVA Late Effects Unspecified Cerebral Infarction Cerebral Palsy Dementia Diabetes Mellitus Diabetes, Adult Insulin Dependent Down’s Syndrome Hypertension Mental Retardation Multiple Sclerosis Muscular Dystrophy Obesity, Morbid Paraplegia Quadriplegia Renal Failure Chronic Rheumatoid Arthritis Traumatic Brain Injury

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Total # Clients 23 17 10 10 20 26 41 83 12 20 36 13 13 18 82 31 12 23 54 10 12 44

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Table 5—Primary Disabilities of Current Clients, ages