Below is the Autism Society of North Carolina (ASNC) weekly update on policy changes and legislation related to local, state, and federal COVID-19 emergency orders. This post covers May 6 – 12. For daily updates, information, and help during the emergency, we recommend the following sources:
- NC DHHS COVID-19 page
- CDC COVID-19 page
- (Raleigh) News &Observer Coronavirus coverage
- NC Council on Developmental Disabilities COVID-19 resource page
- Hope4NC Hotline for mental health resources 24/7: 1-855-587-3463
- Hope4Healers Helpline for care professionals 24/7: 919-226-2002
Access to health care concerns:
ASNC continues to advocate for people with autism and their families and monitor state and federal policies on health care during the COVID-19 emergency.
- Disability Rights NC has filed a complaint with the US office of civil rights to report discrimination on the basis of disability in North Carolina’s current emergency plan.
- Advocates for people with disabilities have been urging the state of North Carolina to strengthen their policies on care rationing in response to concerns that policies under consideration by health providers/hospitals will discriminate against those with disabilities. Advocates have also raised concerns that medical professionals may not be listening to those close to the individual when assessing health care during an emergency.
- At the federal level, US Senator Bill Sasse has introduced a bill he hopes will change some states’ discriminatory policies by limiting their access to medical equipment from the federal strategic stockpile unless care rationing policies change. The Senator hopes to include it in future COVID-19 legislation form Congress, but it’s unclear at this time when or if Congress will come to an agreement on a fifth bipartisan COVID bill.
Hospital admissions advocacy resources:
ASNC and other advocates signed onto a letter several weeks ago urging hospitals to recognize that under the law accommodation must be made for exceptions to restricted visitation policies. Individuals with disabilities may have needs that require them to have someone there to support them in decision making and treatment because of altered mental status, intellectual or cognitive disability, communication barriers, or behavioral concerns. They have a right to accommodation in all care settings, including the right to have someone accompany them into the hospital and infection control guidance from the CDC includes allowing essential visitors (item 6). If you have a loved one with autism or I/DD you can prepare for a potential admission with some of these tools:
- Help for advocating for reasonable accommodations in hospitals
- Letter from the Arc of NC, which ASNC is signed on to, to give to medical providers
- Form to report your conditions and/or disabilities to physicians if you need to go to the hospital to be treated for COVID-19
North Carolina moves into Phase 1:
The state moved into Phase one of the gradual reopening plan on May 8. Some businesses that were closed can reopen, including many retail stores, but with limits on occupancy. State parks are encouraged to open. During this phase, everyone is encouraged to continue to avoid close contact. Some counties may have additional restrictions still in place. More info about Executive order 138 and Phase 1 reopening can be found here.
As our state moves forward the NC Department of Health and Human Services is asking people to remember these three things to continue to slow the spread of COVID-19 and flatten the curve. If you leave home, practice your Ws: Wear, Wait, Wash
- Wear a cloth face covering if you will be with other people.
- Wait 6 feet apart. Avoid close contact.
- Wash your hands often with soap and water for at least 20 seconds or use hand sanitizer.
NCGA Session:
Lawmakers continue to hold some of their regular committee meetings remotely, and the House COVID-19 sub-committees are meeting again to hear updates and consider additional recommendations for COVID-19 related legislation during the short session. The regular “short session” should reconvene on May 18th with skeleton sessions being held until lawmakers return to Raleigh. The public can listen or view most committee meetings online at www.ncleg.net by checking the Legislative Calendar.
How you can help:
Funding in the first COVID-19 emergency legislation did little to address services and supports for those on the waiting list, the rate changes needed to retain direct support professionals in community-based services or to support organizations who are providing services.
The Autism Society of North Carolina continues to advocate with state agencies, LME MCOs, and the NC General Assembly for our public policy priorities, as well as the well-being, safety, and rights of people with autism during this pandemic. Stories from constituents can make a significant impact. We urge you to join us by contacting your elected officials.
When you contact your North Carolina General Assembly (NCGA) House and Senate members, ask them to support people with autism and their families. Please share your stories of life with autism. Use email and social media to reach out to your elected officials, as the legislative building is not currently open to the public. Find contact information for your representatives here. Here are several items of concern to the autism and I/DD community.
- Funding is needed to ensure community IDD providers have the capacity to serve people, especially those in crisis. Current relief legislation such as the Payroll Protection Plan (PPP) does not offer help to all provider agencies.
- Rate increases are needed to retain enough direct support professionals during and after the crisis.
- There are still over 14,000 people on the waiting list for Medicaid waiver services. These individuals DO NEED supports during and immediately following the crisis – they cannot be forgotten.
- School systems must have the funding to support students with special needs, both with remote learning and for compensatory education as they return to schools.
- The uninsured in North Carolina need coverage more than ever. Fill the health care coverage gap, regardless of COVID-19 status.
- Allocate funding to support Medicaid Transformation so the needs of the whole person can be addressed, and care management can be restored.
Questions? Please contact Jennifer Mahan, Director of Public Policy at jmahan@autismsociety-nc.org.
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