We Need Your Advocacy Now.

August 28, 2020 By anne-cauley

Our Executive Director Denise Fisher recently sent this letter to our representatives, advocating for the importance of our State’s 30 Independent Community Day Service (CDS) programs. Current IDHS decisions put the these programs at risk, possibly leading to a reduction in capacity and infrastructure in the short term that will have ramifications to the sector for years to come. To learn more, please read our letter to our representatives. Below we have provided a draft to get you started should you want to help in this advocacy effort.

Dear Governor / Representative / Senator:

I applaud your work to support Illinois’ human service sector. I can only imagine the pressure of your job during these uncertain times. Your leadership and shared values are reassuring to nonprofits like Arts of Life. 

I’m writing to request your intervention in the looming catastrophe for independent programs that serve people with disabilities. Out of the state’s 320 Community Day Programs, there are just 30 independent programs in all of Illinois. These programs offer the opportunity for a unique level of advocacy, support, and supervision to the most vulnerable among our citizens. They are also an essential component to the state’s work to deinstitutionalize over the past decades, providing meaningful vocational opportunities and community for individuals outside of their residences. 

As much as I appreciate the position IDHS is in and the leadership of Director Stark, their decisions continue to support larger agencies that provide both residential and CDS services. As a result, organizations like my own that depend on state funding will be out of business before the end of the fiscal year. 

Illinois continues to rank among the worst states in supporting people with intellectual and developmental disabilities. Now the state appears to be returning to an institutional landscape where residents with disabilities are restricted to living and working in one facility for the foreseeable future. The impending loss of the state’s independent CDS programs takes us further backward with ramifications that will take years to undo. 

To dive into the nitty gritty for a moment – our organizations have had access to one revenue stream at a time since March – retainer payments, then the PPP loan, then reinvention payments. In totality, this has meant a reduction in support while we simultaneously were told to retain staff to be prepared for reopening. At the same time residential providers were offered a straight-forward increase of 5% to support their work. Now, as CDS providers look to reopen we will only be able to bill the full $12.79 / hour for a total of five hours a day for participants who are on-site and we are restricted to supporting only 50% of our participants on-site. For a small organization like mine, full capacity is still well under the 50 members of the general public allowed to gather by the state of Illinois. , We are further limited by the newly announced rate of a paltry $5.46 / hour for  any virtual programming we provide to those unable to participate in person  . In contrast, residential providers will continue to receive their 5% increase and can now also receive CDS funding at the full rate for an expanded seven hours a day.

We are in an impossible position. There is a very real possibility that residential providers will exhaust the available funds (limited to 1100 hours a fiscal year per person) over the upcoming months. So if participants delay their return based on their personal risk assessment and return next spring, for example, there will be no remaining funds. CDS funds account for half of my organization’s  overall budget. If they are unavailable for an entire fiscal year, we will need to reduce our programs and staff. Participants will be ready to return and we will no longer have the infrastructure to support them. 

Before the pandemic, a person with IDD would have a residential rate and 1100 hours of day/vocational services. I contend that residential providers should not get access to both a 5% increase to the residential rate and CDS funds. Rather, if the residential provider is given access to our 1100 hours for day services, the funds for the 5% increase should be allocated toward the CDS providers. 

I further contend that we should indeed be allowed to reinvent our programs and to bill a higher rate for virtual programming which provides an important lifeline to participants who are high risk. Because our priority was keeping our community together, giving our artists some type of routine, and ensuring access to their creative practices, we have been offering five hours a day of virtual programming to our artists since the forced closure. An emergency relief grant allowed us to purchase tablets and art kits so that every one of our artists could participate until we were able to resume in-person programming. Unfortunately, this programming is clearly not valued by the state as evidenced by the embarrassingly low rate established for these services.  Arts of Life is on pace to lose $400,000 this fiscal year (40% of our operating budget) without additional reinvention funding from IDHS/DDD.

Allowing the closure of CDS programs is a step in the wrong direction. The organizations that close will not return, cutting off a critical lifeline to work and community for individuals with disabilities. This cannot be allowed to happen. The human toll this will take on people with disabilities is unfathomable. Participants will be limited to staying at home without a vocational or day training plan and, in the worst case scenario, in isolation. The small gains that the Bogard and Ligas class action suits fought for will be erased. The rate of depression and anxiety, which is already high, will skyrocket and people will give up hope. 

My fear is that you, as a legislator, are not hearing this perspective. You hear that increasing funding to residential programs provides the level of support needed for people with IDD. I’m writing to tell you that this isn’t true. Independent CDS providers like Arts of Life, are experts in the field with decades of experience. Just as I wouldn’t assume to understand supporting people in their homes, I would hope that Director Stark would understand that residential providers are not skilled in vocational services. The clock is ticking for our most vulnerable citizens and for the future of disability services. We need your advocacy now. 

Respectfully,

Denise Fisher

Executive Director, Arts of Life


WANT TO HELP?

We encourage you to contact your representatives to let them know that you care about Independent Community Day Services.To get you started, here is a draft that we encourage you to edit and personalize:

Dear Governor / Representative / Senator:

Thank you for your leadership and support of Illinois’ human service sector. 

I’m writing to request your intervention in the looming catastrophe for independent programs that serve people with disabilities. Out of the state’s 320 Community Day Programs, there are only 30 independent programs. These programs offer the opportunity for a unique level of advocacy, support, and supervision to the most vulnerable among our citizens. They are also an essential component to the state’s work to deinstitutionalize over the past decades, providing meaningful vocational opportunities and community for individuals outside of their residences. Yet, the IDHS and Director Stark continue to support larger agencies that provide both residential and CDS services. As a result, organizations that depend on state funding will be out of business before the end of the fiscal year. 

Illinois continues to rank among the worst states in supporting people with intellectual and developmental disabilities. Now the state appears to be regressing to an institutional landscape where residents with disabilities are restricted to living and working in one facility for the foreseeable future. The impending loss of the state’s independent CDS programs takes us further backward with ramifications that will take years to undo. 

Our independent programs are in an impossible position. Before the pandemic, a person with IDD would have a residential rate and 1100 hours of day/vocational services. Now, residential providers have received a 5% increase in funding AND access to the CDS funds. There is a very real possibility that the available CDS funds (limited to 1100 hours a fiscal year per person) will be exhausted over the upcoming months. This will destroy the infrastructure to support participants if they opt to return to their independent programs in Spring 2021. 

I strongly urge you to support a transfer of the funds allocated for the 5% increase to these independent programs. I further contend that these organizations should be allowed to bill a higher rate for virtual programming which provides an important lifeline to participants who are high risk. 

Allowing the closure of CDS programs is a step in the wrong direction. The organizations that close will not return, cutting off a critical lifeline to work and community for individuals with disabilities. This cannot be allowed to happen. The human toll this will take on people with disabilities is unfathomable. The small gains that the Bogard and Ligas class action suits fought for will be erased. 

The clock is ticking for our most vulnerable citizens and for the future of disability services. We need your advocacy now. 

Respectfully,