VOR comments to CMS on the true costs of implementing the 2014 federal rule on HCBS

VOR is a national organization that supports a full array of services and settings to serve the diverse needs and preferences of people with developmental and intellectual disabilities. This is from pages 3 to 4 of VOR's response to a request for information from the federal agency, CMS, that regulates Medicare and Medicaid. The comments are dated 1/9/17. 

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...CMS needs to assess the true cost of implementing the 2014 HCBS [Home and Community-Based Services] rule. Complying with the rule is proving costly for the states, resulting in states cutting services and displacing vulnerable individuals from their homes. The closing of congregate settings [those serving more than 3 or 4 people with disabilities together] to comply with the new rule and so-called Olmstead enforcement activities have further harmed disability service systems in states by increasing wait lists and forcing people into inappropriate settings they did not choose, settings that are often unprepared to ensure their health and safety. The whole system of care is being undermined in the name of inclusion, integration and Olmstead enforcement, contrary to the plain language and intent of Olmstead as a vehicle for choice.

The expectation of savings from moving individuals from congregate care (ICF’s/IID) [Intermediate Care Facilities for IID] to smaller licensed group homes, or from small group homes to unlicensed community settings, is unlikely to be realized unless there is also a reduction in the quality or quantity of services needed by individuals with I/DD. These expectations are often based on faulty cost comparisons, which fail to account for the full array of public benefits accessed by individuals receiving HCBS care. Unsustainable costs have resulted in even longer waiting lists and tragic outcomes. [See VOR’s “Widespread Abuse, Neglect and Death" in Small Settings Serving People with Intellectual Disabilities”, 2016]

Often, the increase in HCBS comes at the expense of ICF/IID residents who lose their homes due to federally funded litigation. Happily situated ICF residents pressured or forced to leave ICFs through litigation receive HCBS placements ahead of individuals who have been waitlisted for years. The policy of shutting down successful residential placements is even more absurd when you consider many of the wait-listed individuals may in fact prefer and can benefit from HCBS settings. These individuals are forced to wait longer now that former ICF/IID residents move to the front of the line.

The Case for Inclusion, annual reports produced by UCP on how well state Medicaid programs serve people with I/DD, shows that with the increase in the use of Home and Community-Based Services over the last decade, waiting lists for residential and other services have increased from 74,000 in 2005 to 350,000 in 2016, an increase of nearly 400%. At the very least, it can be said that increased use of HCBS has not resulted in fewer people waiting for services.