IL HCBS Waiver for Persons with Brain Injury

The HCBS Waiver for Persons with Brain Injury Waiver is a Medicaid program that provides services and supports to eligible individuals with brain injuries in Illinois. 

Overview of HCBS Waiver for Persons with Brain Injury

The HCBS Waiver for Persons with Brain Injury (BIW) is one of the Medicaid Home and Community-Based Services (HCBS) waivers in Illinois. The purpose of this waiver is to provide services and supports that enable individuals with brain injuries to live in their own homes or other community settings rather than in intermediate care facilities for persons with intellectual or developmental disabilities (ICF-I/DD). The BIW serves individuals who meet the following criteria:

• They have a brain injury or a related condition that causes significant functional limitations in at least three areas of major life activity (such as self-care, communication, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency).
• They are eligible for Medicaid based on income and resources.
• They require the level of care provided in an ICF-I/DD.
• They choose to receive services in the community instead of in an ICF-I/DD.

The BIW is designed to meet each participant's individual needs and preferences. The participant, along with their family, guardian, or advocate, works with a service coordinator to develop a care plan that outlines the goals, outcomes, and services that the participant will receive under the waiver.

Eligibility Requirements

To be eligible for the BIW, an individual must meet the following requirements:

• Be a resident of Illinois.
• Be 18 years old or older.
• Have a brain injury or a related condition that causes significant functional limitations in at least three areas of major life activity.
• Be eligible for Medicaid based on income and resources. The income limit for the BIW is 300% of the federal benefit rate (FBR), which is $2,382 per month in 2023. The resource limit is $2,000 for an individual or $3,000 for a couple.
• Require the level of care provided in an ICF-I/DD. This means the individual needs daily active treatment and supervision due to their brain injury or related condition.
• Choose to receive services in the community instead of in an ICF-I/DD.

To apply for the BIW, an individual must complete an application form and submit it to their local Department of Human Services – Division of Developmental Disabilities (DHS-DDD) office1. The DHS-DDD will then conduct an assessment to determine the individual's eligibility and level of care needs. If the individual is found eligible, they will be placed on a waiting list until a slot becomes available. The waiting time may vary depending on the availability of funding and services.

Services and Supports

The BIW offers a range of services and supports that help individuals with brain injuries live independently and participate in their communities. Some of the services and supports available under the BIW are:

• Service coordination: This service helps participants access and coordinate their waiver and other community services.
• Consumer-directed personal assistant: A service that allows participants to hire and direct their assistants who assist them with activities of daily living (such as bathing, dressing, eating, etc.) and instrumental activities of daily living (such as shopping, cooking, cleaning, etc.).
• Day habilitation: A service that provides structured activities that enhance participants' skills and abilities in communication, socialization, self-care, mobility, etc.
• Home health aide: A service that provides skilled nursing care or personal care by a certified home health aide under the supervision of a registered nurse.
• Home modification: A service that provides physical adaptations to participants' homes necessary to ensure their health, welfare, and safety or enable them to function independently.
• Respite: A service that provides temporary relief to unpaid caregivers responsible for participants' care. Respite can be provided in the participant's home or another setting.
• Supported employment: A service that provides ongoing support to participants employed in competitive or integrated settings. The service helps participants find and keep jobs that match their interests and abilities.
• Transportation: A service that provides non-medical transportation to participants who need assistance to access their waiver and other community services.

The BIW also covers other services such as adaptive equipment, assistive technology, behavior intervention and treatment, communication devices, crisis intervention, environmental accessibility adaptations, family and individual counseling, financial management services, home-delivered meals, homemaker, independent living skills training, interdisciplinary team, interpreter services, nutritional counseling, personal emergency response system, specialized medical equipment and supplies, supported community living, and vehicle modification.

The amount and type of services that each participant receives under the BIW depends on their individual needs and preferences. The participant's service coordinator will help them choose the most appropriate and cost-effective services that meet their goals and outcomes. The BIW has a cost cap that limits the amount spent on each participant's services. The cost cap for the BIW is $47,000 per year in 2023.

Compensation for Caregivers

One of the benefits of the BIW is that it allows participants to self-direct some of their services, such as consumer-directed personal assistant and respite. Self-direction means that care recipients can choose who provides their services, including their family or friends. In other words, family caregivers can get paid to care for their loved ones under the BIW.

However, there are some limitations and conditions that apply to this option. For example:

• Family caregivers cannot be paid for providing services to their spouses or minor children.
• Family caregivers must meet the same qualifications and requirements as other service providers, such as completing training, background checks, and documentation.
• Family caregivers must be hired and supervised by a financial management service (FMS) agency that handles the payroll and taxes for the service providers.
• Family caregivers must follow the participant's service plan and budget that the DHS-DDD approves.
• Family caregivers must provide necessary and reasonable services for the participant's health and welfare.

The amount of compensation that family caregivers receive for providing services under the BIW depends on several factors, such as the type and frequency of service, the FMS agency's fee schedule, and the participant's budget. Illinois's average hourly rate for consumer-directed personal assistant providers is $13.48 in 2023. The average hourly rate for respite providers in Illinois is $11.98 in 2023.

A Note from Givers

If you are a family caregiver for a person with a brain injury, you may be eligible for this program that provides valuable services and support, including compensation for your caregiving work. To determine if you qualify for this program, please fill out this form.