Autism CARES 2019: Push for movement before expiration
The Autism CARES Act - which has expanded research and coordination, increased public awareness and surveillance, and expanded interdisciplinary health professional training, including LENDs, to identify and support children and youth with Autism and their families - will sunset (expire) on September 30, 2019, without a successful reauthorization. Bills to reauthorize the Act have been introduced and need co-sponsors (S. 427, HR. 1058). We are pushing hard for action before the July 4th recess to ensure reauthorization happens before expiration. Currently 25 Senators and 117 Representatives have joined as co-sponsors.
Action Steps:
Contact your Congressional delegation and make sure they are engaged in the reauthorization. Check the House List and if your Representative has not yet co-sponsored call them and ask them to do so. Capitol Switchboard: (202) 224-3121 (voice) or 202 224-3091 (TTY)
Sample Script: "I am [Name] from [City]. I have seen the impact of Autism CARES and the lives changed because of this important legislation. I urge you to support and co-sponsor H.R: 1058."
Check the Senate List and if one or both of your Senators has not yet co-sponsored call them and ask them to do so. Capitol Switchboard: (202) 224-3121 (voice) or 202 224-3091 (TTY)
Sample Script: "I am [Name] from [City]. I have seen the impact of Autism CARES and the lives changed because of this important legislation. I urge you to support and co-sponsor S.427."
If you are in a district where your members are already co-sponsors, educate members of your social circle who live in other areas and ask them to call. Your story and ask can help others become engaged.
Assistive Technology
On June 13, Senator Casey (D-PA) introduced the Access to Free Speech for All Act (AFSFA) (S.1836) with Sen. Hassan (D-NH) and Sen. Leahy (D-VT) as original co-sponsors. This bill aims to make sure individuals get the communication devices and services they need. Teachers, services providers, allied health professionals, paraprofessionals and program managers and coordinators, as well as individuals themselves and family members all need to be aware of augmentative and alternative communication devices and services. The AFSFA would create three to five training, technical assistance and research centers in geographically diverse regions to increase the awareness of the needs for augmentative and alternative devices and services. The Coleman Institute for Cognitive Disabilities, the Autistic Self Advocacy Network and AUCD have been the leading proponents of a National Resource Center on Augmentative and Alternative Communication.
What This Means to You:
Many of our members or their family members have lived experience as people with complex communication needs. Many others seek to support access to education, health care and work force participation that lead to self-determination, independence, productivity, and a healthy and satisfying quality of life as part of their professional lives.
The AFASA will address needs that AUCD and others in the disability community have been seeking to meet.
Action Steps:
Contact your Senators about AFASA and the impact it would have on your state.
Encourage the organizations that you are personally and professionally a part of to endorse the bill.
Also on June 13, Senator Casey (D-PA) and Senator Collins (R-ME) introduced the 21st Century Assistive Technology Act (S. 1835). The bill increases funding for state assistive technology programs to provide for greater resources to rural regions and the increasing need among older individuals, and improved efforts to ensure access to assistive technology keeps pace with advances in technology.
What This Means to You:
People with disabilities who use or need AT are often served by their local AT programs.
Sixteen UCEDDs are grantees of the AT Act and all of our network members are engaged in assistive technology working closely with AT Act grantees.
Acton Step:
Contact your Senators about the AT Act and the impact it would have on your state.
Emergency Preparation
TheReal Emergency Access for Aging and Disability Inclusion for Disasters Act (REAADI) (S. 1755, HR 3208) was introduced in the House and Senate on June 10, 2019, by Senator Casey (D-PA) and Congressman Langevin (D-RI). REAADI would establish a National Commission on Disability Rights and Disasters to study the needs of individuals with disabilities, older adults and others with access and functional needs throughout emergency preparation and planning, disaster response, recovery and mitigation. Additionally, it would provide financial support to develop and provide technical assistance and training to state and local emergency managers as well as disaster relief agencies.
The Disaster Relief Medicaid Act (DRMA) (S. 1754, HR 3215) was introduced in the House and Senate on June 10, 2019, by Senator Casey (D-PA) in the Senate and Congresswoman Shalala (D-FL) in the House. DRMA would ensure that individuals eligible for Medicaid who are forced to relocate due to a disaster are able to continue to access their Medicaid supported services.
Dr. Carol Salas Pagán from Puerto Rico's University Center on Developmental Disabilities was a speaker for the press conference celebrating the introduction of these bills. She said, "In Puerto Rico, 48% of the population are under the poverty line; 22% of the population live with a disability; 30% of the population are age 65 or older. So, half of the population is in a vulnerable state during emergency disasters. This legislation which is inclusive of the territories could make the difference to ensure the well-being and the lives of American citizens who live in Puerto Rico in the event of future disasters."
What This Means to You:
Whether it is a hurricane, wildfire, flood or blizzard in your state, disaster events are disproportionately impacting older adults and people with disabilities - PWD are two to four times more likely to die or be injured in a disaster.
Right now the move from one's home state to a host state as a result of a disaster can mean the loss of access to long-time services and supports through Medicaid.
Both bills will ensure people with disabilities and older adults will have full and equal access to disaster preparedness, response, recovery, and mitigation.
Contact both your Senators and Representative and ask them to support both bills.
Healthcare
Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 (HR 3253) was introduced on June 13th, by Congresswoman Dingell (D-MI) and Congressmen Guthrie (R-KY). It would provide for certain extension with respect to Medicaid programs under the Social Security Act. It would fund 4.5 years of Money Follows the Person (MFP) and Spousal Impoverishment Protections.
What This Means to You:
MFP has allowed people with disabilities to transition from institutions back into the community. There are currently 43 states and the District of Columbia participating in the MFP demonstration grants increasing the use of home and community-based services (HCBS).
People with disabilities receiving HCSBs could be at risk of losing Medicaid eligibility without spousal improvement protections - which allows for a spouse to keep a share of the couple's income and assets to meet their needs without risking Medicaid eligibility.
Action Step:
Contact your Representative and ask them to support this bill.
Employment
The U.S. Department of Labor's Office of Disability Employment Policy (ODEP) is hosting a national online dialogue which has been extended to June 21st to gather perspectives on Section 14(c) of the Fair Labor Standards Act. AUCD has joined the dialogue and posted organizational comments.
Section 14(c) of the Fair Labor Standards Act authorizes employers who hold a certificate from the Department of Labor Wage and Hour Division (WHD) to pay wages that are less than the federal minimum wage for the work being performed to workers who have disabilities.
To date the comments do not proportionally reflect the positive experiences people with disabilities are having with competitive integrated employment.
Action Step:
Share your thoughts via this site before June 21st or contact them via email at [email protected] or call ODEP at 202-693-7880.
To guide you, a video tutorial explaining the process for submitting comments has been made by the Association of People Supporting Employment First (APSE). Please consider:
Sharing your individual stories about employment in all settings for people with disabilities.
Sharing your thoughts on supports needed to increase workforce participation of people with disabilities.
Sharing your experience as an employer.
Tuesdays with Liz: 'Mondays with Martha' Crossover Special 2
Liz is once again joined by Martha of 'Mondays with Martha' in this crossover special. They chat about how they view their own disabilities, and how they define disability and advocacy.
A network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families, and communities.
