Registration for Living with Autism 2019 Conference, Health Care Seminar, SEAT trainings – two dates left, The Alliance Fall 2019 Regional Training, and other upcoming events:

Arc Leaders Meet with Sec Hou
On Friday Arc leaders, Sue O’Conner, John Porter, Lore Baker, Linda Tortorelli, Meg Cooch, Katherine Hamann, and Nafia Khan met with Sec Hou and Assistant Secretary Coleman to talk about building capacity in the community to be able to respond to the needs of all people with disabilities regardless of need of support including diversion from institutionalization as well as improving transition for people coming out of institutions.  We also talked with them about common assessment and ensuring a person centered approach is utilized regardless of where people live.  We expect a continued discussion going forward.

Medicaid Bill Siging
Shirley Perez, Ligas/FSN Program Director, participated in Governor Pritzker’s signing of the Medicaid Omnibus bill on Monday.  This bill is an effort to improve Medicaid application and re-determination experiences and stop the many Medicaid issues that people with disabilities have in accessing healthcare.  Seen here with Sec Hou and Illinois House Majority Leader Harris.

DDD Releases Assistive Technology 
We are excited to share the Assistive Technology RFI.  This is a recommendation from the AT work group of the Ligas Rates Oversight Committee!  A Thanks to DDD for moving on this so quickly.  It is a great opportunity for organizations that have invested in technology and wants to expand or who are interested in moving into the space.  People with disabilities and families who are interested in utilizing AT should talk to your service provider to see if this is a good opportunity.  Please note – because this is an RFI, there is not a range of funding but DDD has around $200,000 total for funding.  It is expected that at least four proposals will be funded.  Negotiation can occur between DDD and applicants as well.

From DDD:
As part of the on-going efforts of DDD and the Rates Oversight Committee, an RFI has been released requesting information on assistive technology strategies service providers are employing on behalf of the people they serve and offering funding assistance to providers who want to expand current efforts or who have innovative ideas about strategies they’d like to test to increase independence through assistive technology.
The RFI is attached for your convenience and can also be located on the DHS website at  Please help us in getting the word out by forwarding this on to your email lists.  All responses are due back no later than COB Monday, September 16.

Dental Access
Advocate Illinois Masonic Medical Center regarding the expanded OR oral services to special population and referral form for these services.  Here is the news release.

3.5% – Working with DHS/HFS
We continue to work with DHS/HFS to determine how to implement the 3.5% rate increase fully.  Illinois is waiting for CMS to approve the increase and then it will be implemented.  The challenge is that Illinois can not make the rate increase retroactive for waiver services.  Thus, they are trying to determine how to get the funding allocated released.  They Derve More Campaign continues to apply pressure and support to the administration that is working to address this issue.  More information to follow.  

Federal Issues
Proposed Changes to Definition of I/DD
The American Psychiatric Association (APA) is proposing to change the definition of intellectual disability in the upcoming edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the core diagnostics manual for psychiatrists and other medical experts. This proposal is concerning because it would, among other issues, overly focus on intellectual quotient (IQ) for diagnosis. It would also require clinicians to prove that adaptive challenges are caused by intellectual disability, which clinicians do not necessarily have the capacity to do. Readers interested in learning more about this issue will find the American Association on Intellectual and Developmental Disabilities’ (AAIDD) comments to the APA informative. Readers seeking to submit their own comments should note the August 14 deadline.

CMS Releases Heightened Scrutiny Bulletin
The Centers for Medicare & Medicaid Services (CMS) issued an Informational Bulletin that describes how heightened scrutiny applies to construction of new settings that are presumed institutional as outlined in the home and community-based services (HCBS) settings rule at 42 CFR 441.301(c)(5). The Bulletin revises prior guidance issued in 2016 to now allow states to submit a setting to CMS for heightened scrutiny review prior to Medicaid beneficiaries receiving services in the setting.

CMS also clarifies in the Bulletin when Federal Financial Participation for Medicaid-funded HCBS will be available upon CMS determination that a newly constructed presumptively institutional setting adheres to the home and community-based settings requirements.

Nicole Jorwic, The Arc of the United States’ Director of Rights Policy, indicates that this is still a useful tool when talking with developers and housing agencies to encourage them to state with inclusive models.  We are happy they didn’t completely rescind the original new construction guidance, but it does weaken the rule it by saying that if a setting exists and is presumed institutional, it can be overcome if private-pay individuals have access to the community.  The last bulletin was stronger in discouraging states from building new settings that are presumptively institutional.  This one does “lightly” discourage:  “CMS encourages states, providers, builders and other stakeholders to thoughtfully consider alternatives to new development of presumptively institutional settings. However, in the event the new construction is considered presumptively institutional, CMS believes that an
accurate analysis of a setting’s adherence to the regulatory criteria can be performed at the state
and federal levels based on the experiences of non-Medicaid beneficiaries.”

We continue to advocate to meet with state and federal leaders about implementation of HCBS settings rule in Illinois. 

Action Alert

Stop Attacks on Discrimination Protections in the ACA

Major Recent Events

Budget & Appropriations: Congress Approves Bipartisan Budget Deal

The House and Senate approved the Bipartisan Budget Act of 2019 (H.R.3877) on July 25 and August 1, respectively. This bill prevents scheduled discretionary cuts from taking effect and increases limits on discretionary spending. Additionally, it suspends the debt ceiling until August 1, 2021. The House of Representatives is likely to revisit its previously approved appropriations bills in order to reduce funding to comply with these caps. The Senate has been waiting for a budget deal before drafting its fiscal year (FY) 2020 appropriations bills. The new fiscal year begins on October 1, making it likely that a continuing resolution will be needed.

Medicaid/LTSS: House, Senate Approve Extensions of MFP, F2F Health Information Centers, Spousal Impoverishment Protections

The Senate and House of Representatives passed the Sustaining Excellence in Medicaid Act of 2019 (H.R.3253) on July 25 and 30, respectively. This bill adds $122.5 million for the Money Follows the Person (MFP) Rebalancing Demonstration, extends the authorization for Family-to-Family (F2F) Health Information Centers through 2024, and extends the spousal impoverishment protections for home and community based services beneficiaries until December 31. F2F Health Information Centers provide critical support to families caring for children and youth with special health care needs (and assist providers, state and federal agencies, legislators, and other stakeholders to better understand and serve this constituency). MFP has helped more than 88,000 seniors and individuals with disabilities move out of nursing homes and institutions. Independent evaluations have proven that MFP improves the quality of life for individuals and has reduced Medicaid and Medicare expenditures by approximately 23%. The spousal impoverishment protection allows the spouse of a Medicaid long term services and supports (LTSS) beneficiary to maintain a modest amount of income and resources for food, rent, and medication. This bill must now be signed by President Trump in order to become law. The Arc continues to push for a long term extension of MFP via the EMPOWER Care Act which is currently under consideration in the Senate.People with intellectual disabilities are often not told about their medicines and their potential side effects
Medical Xpress, 8.02.19
Our latest study adds to the evidence of these health inequalities. It shows that many people with intellectual disability, who can make decisions about their everyday life, aren’t given clear information about their medication. As a result, they often don’t understand the drugs prescribed for them or their potential side effects.