The Arc’s network of national, state and local chapters impacts public policy at all levels. Through our advocacy and grassroots mobilization, The Arc Tennessee works to protect the civil rights of people with intellectual and developmental disabilities (I/DD) and their families.
The Disability Advocacy Network Join The Arc Disability Advocacy Network to keep informed of critical issues impacting people with IDD & their families. The Arc network is only as strong as its members. Your voice is critical to ensuring that the needs of people with I/DD and their families are included anytime a law is passed or changed or when programs are designed or redesigned. To learn more about public policy advocacy and how to help, contact Carrie Hobbs Guiden.
Federal Government & Federal Legislation
ACTION ALERT! Calls to Congressional Representatives Still Needed! Oppose Proposed Medicaid Cuts and Harmful Changes to Health Care for People with I/DD!
The American Health Care Act (AHCA) that was pulled from a Congressional House vote on March 23, 2017 is being considered again – and the proposed changes, if enacted, will negatively impact the health and quality of life for people with intellectual and developmental disabilities and their families. Below are some of the most frightening proposals being discussed:
Medicaid cuts in the forms of block grants or per capita caps: The federal government would significantly reduce their share of the Medicaid program provided to states. Tennessee receives $2 for every $1 of state money put into the program – federal cuts means that programs like the new Employment and Community First CHOICES will be in jeopardy; waiting lists could begin growing again; and people with I/DD may be forced back into institutional care as their only option for long-term services and supports (LTSS).
Loss of essential health benefits: State may have the option to waive important consumer protections currently in law such as the essential health benefits requirement. The essential health benefits were designed to ensure that health plans cover basic needs such as prescription drugs, mental health services, and rehabilitative and habilitative services and devices, that have been critically important to people with I/DD and chronic health conditions. Without a requirement that basic services be included in the health plans, insurers are likely to drop coverage of therapies or medications that help these vulnerable populations.
No more protections for pre-existing conditions: States may be allowed to waive the requirement for community rating. This would allow the insurance companies to charge people with pre-existing conditions whatever they wanted, essentially making the pre-existing condition protections meaningless. The combination of these changes would make it nearly impossible for people with pre-existing conditions to find affordable plans that cover basic health care services. This potential change is particularly troubling for people with I/DD who are managing complex medical conditions – often from birth.
What Can You Do?
Call your Senators and Congressional Representatives TODAY – and EVERYDAY – to ensure that they understand the devastating impact these changes would have for people with I/DD and their families. Call their Washington DC offices and their local offices – especially next week while they are in recess.
Share this information with family and friends and ask them to make calls
Post this information on your Facebook page and share
We were successful the last time in making our voices heard – we must continue the fight. Below is a short script you can use when contacting your elected officials:
I am a member of The Arc.
I am a person with I/DD, or I am a family member of someone with I/DD, or I am a professional in the disability field.
Do NOT support the American Health Care Act (AHCA).
Do NOT allow cuts to critical Medicaid services to pay for tax cuts.
Do NOT allow states to opt out of requiring health plans to cover basic health care and keep it affordable for people with pre-existing conditions.
Medicaid (TennCare in Tennessee) is a jointly funded program with matching state and federal funds. Under a Medicaid per capita cap, the federal government would set a limit on how much to reimburse states based on enrollment in the Medicaid (TennCare) program. Unlike current law, funding would not be based on the actual cost of providing services. Much like the proposed block grants, the intent of the per capita caps is to restructure the program and save the federal government money. Inevitably there will be cuts in funding in Tennessee. The negative impacts to Medicaid (TennCare) recipients could include:
Losing home and community-based services and supports through the DIDD Medicaid Waivers, through CHOICES or through ECF CHOICES. Waiting lists would quickly grow, and Tennessee already has a waiting list of nearly 6,000
Losing other critical services such as personal care, mental health, prescription drugs, and rehabilitative services. If funds become scarcer, states may decide to stop providing these services altogether.
Being forced into unnecessary institutionalization. States could return to the days of “warehousing” people with disabilities in institutions.
Shifting the costs to individuals or family members to make up for the federal cuts. The costs of providing health care and long term services and supports will not go away, but will be shifted to individuals, parents, states, and providers.
January 20, 2017 ushers in a new President and a new Administration. Many early proposals put forth by the new Administration could have negative consequences for people with I/DD and their families. The Arc is concerned that thousands of people with I/DD could lose critical health care benefits if the Affordable Care Act (ACA) is repealed without a suitable replacement; that converting the Medicaid (TennCare in Tennessee) program to block grant funding or per capita caps could result in significant cuts to health care and long term services and supports that people with I/DD depend upon for optimal quality of life; and that the civils rights of people with I/DD protected under laws such as the Individuals with Disabilities Education Act (IDEA) or the Americans with Disabilities Act (ADA) could get chipped away. To learn more about these issues, click the links below:
The needs of people with I/DD and their families must be considered when passing or changing any law, or developing or changing any program that could impact their quality of life. People with I/DD have the same rights as every other citizen. To learn more about other public policy issues important to people with I/DD and their families, visit The Arc US website Public Policy and Legal Advocacy page.
The Arc Tennessee expresses its sincere gratitute to Governor Bill Haslam for including an additional $8 million in his budget for DSP wage increases.
ACTION ALERT: Contact Members of the House and Senate Finance Committees -Express Support for Direct Support Professional (DSP) Wage Increases
Please contact Members of the Senate and House Finance, Ways and Means Committees and express support for the TNCO budget amendment sponsored by Senator Ken Yager and Representative Martin Daniel to add an additional $2 million in funding to the Governorís $8 million appropriation for increases in DSP wages.
Talking points to share with committee members:
Direct Support Professionals (DSPs) work with some of Tennessee’s most vulnerable citizens – people with intellectual and developmental disabilities and people who are elderly. They are expected to be caregivers, trainers, and facilitators of relationships. They must learn and implement support plans, behavior intervention plans and therapy plans. DSPs are expected to know about community resources; be knowledgeable about health conditions, medications and side effects of medications; and manage budgets and balance checkbooks. They must follow explicit guidelines for documentation and reporting. For all this knowledge and expertise, DSPs are paid an average of $8.50-$10.50 per hour.
It has been nearly 10 years since the DIDD Waiver rates have had a major overhaul. In the meantime, the cost of living and the cost of providing services has risen.
Most DSPs must work significant overtime or more than one job to makes ends meet. This necessity adds stress to an already stressful job. It sets people up for potential abuse and neglect.
The demand for DSPs will only grow as our population continues to age. The position must offer a living wage to attract qualified individuals to this profession.
Tennessee’s most vulnerable citizens deserve consistent, qualified, and competent support staff.
Senate Finance, Ways and Means Contact Information:
The Reliable Coverage Act HB960/SB991 will prevent non-medical switching of prescription drugs by insurance plans during a plan year. Passage of this law would mean that the covered drug formulary that an insurance plan offers at the beginning of a plan year must remain in effect the entire plan year. For many people who take medication to manage chronic conditions such as epilepsy, mental health diagnoses, diabetes, etc., this means more consistency for managing your health conditions. Below is information on this legislation:
The Arc Tennessee and Disability Rights Tennessee track bills that may impact people with disabilities. Weekly updates will begin January 27, 2017 and are available below. In addition, The Arc Tennessee hosts a weekly update conference call every Friday morning at 8:30am central time during legislative session beginning January 27, 2017. If you would like to be added to the list to receive the weekly updates and to receive conference call information, please contact
Carrie Hobbs Guiden.
Other State News
Enrollment for the new ECF CHOICES Program is open for people with intellectual disability (ID) and people with developmental disabilities (DD) other than ID. To start the process for determining eligibility, simply complete a self-referral form. There are three (3) ways to accomplish this task:
If you already have TennCare and Amerigroup or BlueCare is your MCO, call the number on the back of your insurance card and ask for help completing the self-referral form for the ECF CHOICES Waiver.
If you do not have TennCare or United HealthCare is your MCO, contact your DIDD Regional Office and ask for help completing the self-referral form.
West TN Regional Office: 866-372-5709
Middle TN Regional Office: 800-654-4839
East Tennessee Regional Office: 888-531-9876
If you were previously on the DIDD Waiting List for Medicaid Waiver services, you were automatically transferred to the new referral list for the ECF CHOICES Waiver. However, to be considered for enrollment into the program now, you must complete the self-referral form.
Your involvement in public policy advocacy is key to protecting and furthering the rights of people with I/DD and their families and there are many ways you can make a difference. Below are just a few of your options:
Develop relationships with your elected officials both federal and state – meet with them in person, email them, call them and share your personal stories
“Friend” your legislators on social media – Facebook, Twitter, etc. ClickHERE to get social media information for Federallegislators
“Like” The Arc Tennessee Facebook page and “Share” our posts with your Friends
Respond to Action Alerts from The Arc US and The Arc Tennessee
Agree to be a “point person” in your county to alert other families to important legislative action that needs their attention
Respond to requests for public comment on proposed state plans, policies, rules and regulations – the State does take this feedback seriously
Attend public forums, town hall meetings and public hearings
Join committees, task forces, advisory committees
To learn more, access our Webinar Series – The Power of Public Policy Advocacy:
ContactCarrie Hobbs Guidenfor more information on how to get involved in public policy advocacy with The Arc.
Kindred Stories is a joint project between Vanderbilt Kennedy Center and The Arc Tennessee that shares individual and family stories on topics of importance. These collections of stories are shared with state and federal elected officials and others. To read these stories, visit http://vkc.mc.vanderbilt.edu/vkc/resources/kindred/.
To download the latest issue "Access to Health Care" click HERE.
The Arc Tennessee participates in the Disability Policy Alliance (DPA), a public policy advocacy collaborative that also includes the Council on Developmental Disabilities, Disability Rights Tennessee and the Statewide Independent Living Council. To learn more about DPA, visit http://www.fulfillthepromise.org/.