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  • Jason Hahr & Samantha Lebron

Proposed Access Rules May Impact Medicaid’s HCBS Program--Comments due July 3

On the June 22 Thursday national self-advocacy call (SARTAC) call it came to our attention that the Centers for Medicare and Medicaid Services ( have drafted new rules for the Home and Community Based Services (HCBS) waiver known as Access Rules. The public may comment on them until July 3.

We must emphasize that these rules are currently in DRAFT form and not in effect at this point; however, if they do take effect they will have a tremendous impact on the HCBS program nationwide.

You can make public comments on the proposed rules until Monday, July 3. To help you understand the urgency of the matter it is important to understand various viewpoints. The rules can be viewed and comments made at the end of this article.

The first rule requires services providers, or provider agencies, that receive funding from Medicaid to use at least 80% of those funds for Direct Care Workers’ (DCW) compensation, either in the form of higher wages and/or increased benefits such as sick leave, health insurance, and vacation time. Many providers have expressed the idea that using such a large portion of Medicaid funds for DCWs would negatively affect other services they provide. On the other hand, since this publication focuses on self-advocacy we would be doing a disservice if we did not present the self-advocate point of view. Many parents and self-advocates are suggesting the increased wages and/or benefits that DCWs would receive would increase the quality of care provided.

You may wonder what you can do as a self-advocate to make your voice heard. We have posted a summary of the rules below. We urge you to take a look at them and encourage you to make a public comment sharing your personal story about how these proposed changes would impact you. The link for public comment is below the rules.

HCBS Access Rules

  • At least 80% of all Medicaid funds allotted for HCBS services must be used for pay and benefits for direct care workers

  • States must publish the average cost for wages and benefits paid to direct care workers

  • States must set up an advisory group to advise and consult on rates paid for personal care, home health aides, and homemaker services

  • States must report information on the current state of wait lists for HCBS services i.e. how long it is, when people get on and off, and finally what happens after they start receiving services

  • States must show that at least once a year, each person's needs are reassessed i.e. service plans must be updated annually

  • States must have an electronic incident report system

  • States must have a way for clients to file a grievance

  • CMS is coming up with a new way to evaluate the quality of services being provided, in other words a report card for each state

Link to the rules DRAFT and for public comment:


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