An important part of the pro bono services Point Rider provides to families and organizations is helping them to understand and navigate local, state, and federal regulations that impact housing for adults with intellectual or developmental disabilities (IDD) and the funding that adults with IDD may be able to get to live in those settings.
It is important to attend the National HCBS Conference because Medicaid funding is the financial safety net for many adults with IDD, increasingly provided through Home and Community-based (HCBS) waivers. The regulations around those waivers also set the direction for what types of residential and non-residential settings can be supported with waiver funding. These regulation also can impact settings that don’t utilize waiver funding.
In addition, many of the session topics are buttressed by presentations from states Centers for Medicare and Medicaid Services (CMS) considers examples of best practices. Point Rider has projects in development in several states, making state-level programs and contacts valuable now and in the future.
Attending conferences also gets us face time with senior CMS and Administration on Community Living (ACL) officials and insight into how CMS and state Medicaid agencies view funding and supports for adults with IDD for the next few years.
I came away with these themes from this year’s sessions that I attended and conversations I had with CMS and ACL officials:
New CMCS Informational Bulletin on Heightened Scrutiny Review of Newly Constructed Presumptively Institutional Settings
The Centers for Medicaid and CHIP Services (CMCS) quietly issued on August 2, 2019 a new Informational Bulletin (CIB) clarifying two issues raised from their March 22, 2019 FAQs which updated guidance on implementation of the HCBS Final Settings Rule. Point Rider was one of those voices questioning the FAQs because they failed to address pre-determination of a proposed settings’ compliance with the Rule, one of the biggest barriers to new construction of settings that might seek to be HCBS eligible (see our blog post).
CMS did not address pre-construction approvals in the new CIB, instead focusing on newly-constructed settings. Further, the examples it used to illustrate its clarification were specific only to new construction in the same building as an institution, or on the grounds of an institution. Not especially helpful or relevant for most of Point Rider’s clients or followers.
But there was a sliver of positive news. A careful reading of the Aug. 2 CIB, plus answers to our direct questions to Melissa Harris of CMS, reveal that CMS still won’t provide a mechanism to states to give “pre-approval” of pre-construction settings. But I believe they have provided states a path to evaluate proposed new settings and offer an assessment that a proposed setting won’t need to be submitted for heightened scrutiny review if the developer can demonstrate the setting is designed to fulfill the criteria of the Final Settings Rule and March 22, 2019 revised guidance.
Of course, the developer needs to deliver the setting as proposed and failure to do so could invalidate the assessment. How this will work we expect will vary state-to-state, but we are cautiously optimistic.
Incidents and Abuse
There was a significant emphasis on identifying causes and developing solutions for abuse and neglect of seniors and adults with disabilities, especially unreported neglect and abuse in group homes. This heightened emphasis was the result of a Congressional request following several media reports of abuse.
In a session we attended on Health and Welfare, we heard a presentation by the US Department of Health and Human Services (HHS) Office of Inspector General (OIG) about an audit they conducted that identified more than 30,000 Medicare claims that explicitly indicated potential abuse or neglect, and almost 30 percent of those had not been reported to law enforcement.
CMS followed that with a presentation about their National Incident Management survey conducted in July 2019 in which they surveyed to states nationwide on approaches to obtain information regarding how states organize their incident management system to best respond to, resolve, monitor, and prevent critical incidents in their waiver programs.
ACL discussed their Living Well Projects, eight 5-year grants to states with the goal of building the capacity of HCBS systems and enhancing community monitoring to prevent abuse, neglect, and exploitation.
I took the opportunity in the Q&A session to ask CMS, OIG, and ACL if their organizations, or any other organization they knew of, were looking at incident data to see if there might be a correlation between the pay rates of direct support professionals (DSPs) and the prevalence and/or severity of incidents of abuse and neglect. I was surprised to hear that no such analysis was being done. I spoke with Ralph Lollar of CMS after the session to inquire how we might get that data and he said CMS won’t do it, but agreed with my suggestion that a private criminal justice project group might be an option.
Social Determinants of Health
Many of the presentations I attended included this phrase. Social determinants of health (SDOH) are the conditions in which people are born, grow, live, work, learn, and age that shape health. The availability and accessibility of housing, especially affordable housing, is a major social determinant of health. This is an area of emphasis in Point Rider’s work and that of many of our partner projects.
Some of the statistics around housing speak directly to the work Point Rider is doing around the country:
10.3 million renter households in the US are considered extremely low income households
14.4 million individuals with disabilities cannot afford their housing
No county in the US has affordable housing for a person dependent on SSI
Of an estimated 4.7 million adults with developmental disabilities in the US, 75% of them are NOT receiving Medicaid-funded services
This is significant because lack of affordable housing, especially for adults with disabilities, has a major impact on health, which in turn drives up healthcare costs and impacts quality of life.
I did a little research outside of the sessions and found a good issue brief on SDOH published May 2018 by the Henry J. Kaiser Family Foundation: Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity. [https://www.kff.org/disparities-policy/issue-brief/beyond-health-care-the-role-of-social-determinants-in-promoting-health-and-health-equity/]
The Centers for Disease Control and Prevention (CDC) has an extensive section of their website devoted to SDOH [https://www.cdc.gov/socialdeterminants/index.htm]
Putting Point Rider’s Advocacy to Work for Your Organization
The local, state, and federal regulations that impact housing for adults with IDD are complex and ever-changing. An important part of the pro bono work Point Rider does for families and organizations is understanding these regulations, staying abreast of changes, and sharing that information with you. We are available to do small group presentations, video calls, or conference calls with your organization to help you navigate the regulatory landscape. Please contact Mark Olson at firstname.lastname@example.org.