Adult Day Center Enhancement Act

One in 6 people in the United States lives with a neurological disease or condition that can often result in disability, and which may require the individual to seek assistance in carrying out the activities of daily living. Neurological diseases or conditions such as multiple sclerosis (MS), early-onset Parkinson’s disease, and traumatic brain injury (TBI) can also typically affect younger adults in the middle of their lives.

Multiple sclerosis is a chronic, often disabling disease that attacks the central nervous system with symptoms ranging from numbness in limbs to paralysis and loss of vision. Most people with MS are diagnosed between the ages of 20 and 50 years of age. MS is a leading cause of disability in young adults. Persons living with MS who experience more severe forms of the disease are likely to require either home care or nursing home placement, though the vast majority would prefer to remain at home to receive the care they need. Where home care is concerned, approximately 80 percent of such care is provided by unpaid caregivers who are generally family members.

Parkinson's disease is a chronic, progressive neurological disease. The four primary symptoms of Parkinson’s disease are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; bradykinesia, or slowness of movement; and postural instability, or impaired balance and coordination. Other symptoms may include cognitive changes; difficulty in swallowing, chewing, and speaking; urinary problems or constipation; skin problems; and sleep disruptions. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks. It is estimated that nearly 1,000,000,000 Americans will be living with Parkinson’s by 2020 and of those 5 to 10 percent are diagnosed younger than 50 and deemed early-onset.

Traumatic brain injury is a neurological condition that typically results from a blow or jolt to the head or a penetrating head injury and that can impact one or more parts of the brain, thereby temporarily or permanently disrupting normal brain function. The Centers for Disease Control and Prevention estimates that 153 Americans die from TBI every day, and that TBIs contribute to approximately 30 percent of all injury deaths. Traumatic brain injury is also a serious issue that affects military servicemembers. Estimates in prior military conflicts indicate that TBI was present in 14–20 percent of surviving casualties.

Family caregivers are a crucial source of support and assistance for individuals suffering with disabilities. Family caregivers, the majority of whom are women, provide an estimated $470,000,000,000 in unpaid services annually. The supply of family caregivers is unlikely to keep pace with future demand. The caregiver support ratio of potential caregivers aged 45 to 64 for each person aged 80 and older, for instance, is 7 to 1 in 2010, 4 to 1 in 2030, and 3 to 1 in 2050.

The majority of family caregivers (or 54 percent) are caring for someone ages 18 to 74. Forty-six percent of family caregivers are caring for someone 75 or older.

Adult day programs can offer services, including medical care, rehabilitation therapies, dignified assistance with the activities of daily living, nutrition therapy, health monitoring, social interaction, stimulating activities, and transportation to seniors, people with disabilities, and younger adults with chronic diseases.

Adult day programs geared toward people living with neurological diseases or conditions such as MS, Parkinson’s disease, TBI, or other similar diseases or conditions provide an important response to the needs of people living with these conditions and their family caregivers. Adult day programs can help to ameliorate symptoms, reduce dependency, provide important socialization opportunities, and maintain quality of life.

Adult day programs have been shown to provide a range of documented benefits including improvements in functional status, social support, and reductions in fatigue, depression and pain. Adult day programs also reduce ongoing medical care and hospital costs and decrease admissions to nursing home facilities, which can be costly for many families, by allowing individuals to receive health and social services while continuing to live at home.

There are currently few adult day programs focused on younger adult populations in the United States. Although young people living with neurological diseases or conditions may be able to access existing adult day programs, such programs are not typically intended for younger adults living with chronic diseases or conditions, and may not provide the appropriate services to meet the age-related or disability status of these individuals.

Definitions— In this Act:

Authorization of appropriations— To carry out this section, in addition to amounts otherwise made available for such purpose, there are authorized to be appropriated, and to remain available until expended, the following: