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When Clients Do Great Things: Bob Farley’s Advocacy

Because so much of our work and experience involves individual and systemic advocacy, we understand the “toil in the trenches” that many of our clients and their constituents face every day in health care, disability, and education systems. We also understand that fighting the good fight can be a long uphill battle with painfully few and infrequent rewards.

When one of our clients achieves something that proves in glaring terms that the work is worth it, we celebrate with them.

Robert Farley is an Illinois disability attorney we’ve worked with for a few years now. His legal practice focuses on securing appropriate services for children and adults with disabilities. Himself a parent of a young man with disabilities, Bob knows what families go through when navigating the byzantine corridors of disparate and conflicting disability service systems.

Young girl with medically fragile health condition

Alex Garcia/Tribune Photo

When Illinois tried to close budget gaps by changing its health care delivery system for medically fragile children, it proposed significantly reducing the funding available once these children turned 21. Most of these children need ventilators, feeding tubes or other medical interventions to survive. For medically fragile children, these services (which average $11,000 to $16,000 per month) are delivered in the home. Hundreds of Illinois families of medically fragile children knew that under the proposed changes, in-home medical services would no longer be feasible, and their children would have to be permanently institutionalized or hospitalized in order to receive the critical health care services they need. Ironically, the cost of providing the same services in institutional or hospital settings is approximately $55,000 per month.

Bob filed a class action on their behalf in US District Court, alleging that the State’s action violates Title II of the Americans with Disabilities Act because the new policy would force the individuals to receive services in institutional settings, and not in the community.

In July, the Court approved a Proposed Settlement in the case, and a very positive settlement it is. The Settlement Proposal imposes the following conditions on the State of Illinois:

  • Medical Services to be based on medical necessity, not chronological age.
  • Person-centered standardized assessment of medical necessity, levels of services, and resource allocations.
  • Assessments performed on fixed-timetables.
  • Specific service plans that account for the individual’s support system and allow for self-direction that might require more service hours.
  • Family choice in service delivery.
  • ER and hospitalizations monitored to see if service plan adjustments are warranted.
  • Service plans to be reviewed annually and may be reviewed in interim periods if necessary to address changing needs.
  • Involvement of families in changes to services or service plans.
  • Close monitoring when services are changed or titrated.
  • Higher levels of case management and more assistance for families with greater needs.
  • Families Right to Appeal.
  • Court retains jurisdiction to enforce for 3 years.

In October, the Court will conduct a hearing to determine whether the terms of the Consent Decree are fair, reasonable, and adequate, and the settlement should be approved by the Court.

Congratulations to Bob and all the Illinois families who will benefit from his important work. We feel your joy and relief!

the-book-thmbAddendum: Bob has recently published a book for Illinois parents and caregivers of children and adults with disabilities. “The Book: How To Navigate The Illinois Disability System” is available for download free on his website.

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