Sept. 22, 2021: Access Living Testimony to the Joint Hearing of House Committees on Appropriation


October 20, 2021 | by Emma Olson

Access Living Provides Testimony to the Joint Hearing of House Committees on Appropriation

Human Services, Health Care Availability and Accessibility and Mental Health and Addiction

Testimony given by Dr. Angel Miles, Healthcare and Home and Community Based Services Policy Analyst, Access Living

Thank you for this opportunity to testify. My name is Dr. Angel Miles and I’m the Healthcare and Home and Community Based Services Policy Analyst at Access Living.

Access Living is the Center for Independent Living serving Chicago. We are part of the Illinois Network of Centers for Independent Living, the 22 CILs serving people with disabilities around the state. We provide direct services to people with disabilities in the city and lead disability systems advocacy work. In FY 21 we served 1,118 consumers. Due to the pandemic this number is down from previous years.

Core to this work is assisting consumers with transitioning out of congregate settings, gaining access to Medicaid funded HCBS, and providing transitioning and recently transitioned congregate facility residents with peer support and skills training. We were also one of the original co-counsels on the Ligas, Williams and Colbert cases and we are currently a contractor for the Colbert consent decree implementation, assisting in moving out people with disabilities from Cook County nursing homes. In FY 21 (July 1, 2020-June 30, 2021): We received 96 Colbert Williams referrals. We moved 36 consumers. Again, these numbers are down from previous years due to the pandemic.

We want to be clear at this hearing that Access Living views our work in this arena as building opportunities for people to get out of institutional settings and into community settings where they can drive their own life choices to the greatest extent possible. We have a front row seat on the challenges of the transition process, which has only gotten more challenging under Covid.

The LTC transition process continues to readjust in response to the Covid-19 pandemic. Although some restrictions have eased since the end of May, others remain. Based on our experience, the current barriers for transition and integration of people with disabilities in the community include the following:

  • Nursing home visitation policies and practices remain inconsistent. Some nursing homes are letting people who don’t directly work in the nursing home in, and others don’t always allow us in to do outreach even though they are required to by the state. Some nursing homes will also control who we can talk to (e.g. they will only give us three names per week).
    • Some prime agencies have had to operate on budgets that are insufficient for the high volume of cases they are managing. This results in slowing down the assessment process and delays transitions.  Primes would benefit from budget and staff increase to ensure that they can more efficiently manage their cases at a reasonable pace.
    • Consumers also need to be more consistently updated on the status of their application and where they are in the process of transitioning as they frequently express a desire for better communication and transparency. Some consumers are waiting as long as 8 months to be assessed with limited or no updates on the status of their case.
    • We have observed that landlords are increasingly requesting proof of income that is 3x rent and requiring very high credit scores for rental applications. We suspect this trend is some landlords’ way of trying to get around new legislation prohibiting housing discrimination against people with criminal backgrounds. Some of the people we move are people who were formerly incarcerated and they deserve a fair shot at living in the community.
    • More flexible spending needs to be allocated to compensate for the financial gap that sometimes occurs in situations where maximum rent amounts are not sufficient enough to cover rental cost.

Greater investment in institutional diversion and HCBS available is strongly needed. We welcome the federal ARPA FMAP on-time enhancement for HCBS, but there is a lot of work to do.

We recommend that the state:

  • Expand community outreach and information materials for informing people with disabilities about available HCBS, especially when they are hospitalized or receiving rehab services. This requires investing in educating medical personnel about disability and HCBS.
    • Reduce delays in the Home Services Program that are slowing the hiring process for personal care workers. Delays in PA services can put consumers’ health and well-being at risk and can increase employee turnover.
    • Increase pay and benefits available for PA’s. Being a direct support worker needs to be treated as a career choice that is valued.
    • Expand coverage for home modifications and subsidized housing, especially for people 60 and over. People with disabilities are often prevented from transitioning into the community and are instead pushed into nursing facilities because of the inaccessibility and lack of affordability of the housing available to them.  
    • We strongly recommend the state move towards parity in number of support hours for the Community Care Program compared to HSP. Many seniors do not have enough hours of support and sometimes need both personal care and homemaker supports.
    • Expand coverage and access to durable medical equipment, assistive technology and home modifications.Access to these resources is essential for Medicaid HCBS recipients to safely and optimally live in their homes and communities.
    • Actively and intentionally make a stronger effort to recruit more people with disabilities to serve as Long Term Care ombudspersons. The program will then benefit more from people who have both professional and experiential expertise.
    • Establish a hearing where people with disabilities who currently reside in Long term care institutions and those who were recently transitioned into the community can share their experiences with the senate and testify first hand what they believe the strengths and weakness are with Long Term Care in Illinois, especially during the Covid-19 pandemic.

Illinois ranks near the very bottom of states as 46th lowest nationally in investment in Medicaid-funded home and community based services. In order for this to improve the state must significantly increase investment in HCBS, recruit and retain a stable direct support workforce, adequately compensate and support family caregivers, ensure access to home modifications so people can stay in their own homes, eradicate community transition wait-lists such as the PUNS and fully comply with the Olmstead consent decrees.

We should be seizing every possible opportunity for federal investment to move the needle towards greater access for community integration. In addition, IDPH and IEMA must further invest in building the emergency preparedness infrastructure needed to support people with disabilities in long term care during public health or other crises. Successful inter-agency cooperation will save lives. Please reach out to Access Living because we want to partner with you to improve access to HCBS and address these important issues in Illinois. Thank you.