Long-Term Services and Supports Primer

From the Tennessee Disability Coalition

https://www.tndisability.org/article/long-term-services-and-supports-primer

Nearly one in three Tennesseans lives with a disability. Some of these individuals need assistance with activities of daily living, others may need help with transportation and still others may need support for housing or employment. These types of support allow Tennesseans with disabilities to live in their communities, to be included in our society and to lead lives of their choice.

To provide this help, the state of Tennessee offers Long-Term Supports and Services (LTSS) programs. Tennessee’s LTSS offerings are part of several Medicaid waivers that provide Home- and Community-Based Services (HCBS) for Tennesseans with disabilities.

These waivers represent a partnership between the state of Tennessee and the federal Centers for Medicare and Medicaid (CMS). CMS matches state funding for programs that provide HCBS for people with disabilities, and the agency sets some general guidelines about how states should provide HCBS. Ultimately, however, each state has a great deal of flexibility in designing the programs, determining who is eligible, deciding what services will be available and how they should be delivered.

Tennessee’s HCBS programs are the result of the movement to deinstitutionalize individuals with disabilities by developing alternative means of community living with support. The state’s first HCBS waiver for individuals with intellectual disabilities (ID) was approved in 1986. A small waiver for children, and the conversion of state-funded services for adults with ID eventually became what is now known as the “Statewide Waiver”. In the following years, the state would expand access to HCBS by creating other waiver programs.

TennCare is the state agency responsible for Tennessee’s Medicaid programs and for the HCBS waivers. TennCare contracts with the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) to implement three of the waiver programs for people with ID.

Over the years, there have been changes to the ID waivers for a variety of reasons, including a moratorium placed on services by the federal government because of deficiencies in the system, civil rights lawsuits, state comptroller report findings and changes in federal rules for HCBS settings.

During the same time, TennCare also developed HCBS waiver services for adults with physical disabilities and seniors. Limited HCBS waivers in a few areas of the state were eliminated when the General Assembly directed TennCare to develop a more comprehensive system. In 2010 the CHOICES program began implementation.

Following a 2013 Tennessee Comptroller’s audit report, DIDD collaborated with TennCare to redesign the state’s ID services delivery system which addressed issues identified by the Comptroller’s office. Tennessee developed and submitted a new waiver program to CMS, called the Employment and Community First (ECF) CHOICES program, which was approved in 2016. On June 30th, 2016, the state closed enrollment in the three existing DIDD Medicaid waivers and directed new referrals to the ECF CHOICES program.

The ECF CHOICES program is designed differently than the closed Medicaid waivers. TennCare administers the program, but it has delegated key functions to DIDD and three private managed care organizations. Today, the state offers services across three waiver programs and one state-funded support program. They are: ECF CHOICES, CHOICES and the Katie Beckett program, and the state-funded Family Support Program. Each program is intended to support an individual’s independence and their integration into the community. The programs use a person-centered planning process to identify services to be included in each waiver participant’s Individual Service Plan (ISP), which is based on the individual’s goals and the supports necessary to achieve those goals.

Taking Your Medicine Can Be Deadly

Accessible Prescription Labels Save Lives

By Christina Clift, The Memphis Center for Independent Living
For many people taking prescription medication can be challenging. This could be due to an inability to remember to take it as the doctor prescribed, an inability to swallow large pills, opening the bottle, distinguishing the medication or even being able to pay for it. For blind individuals taking prescription medication can be deadly due to inaccessible prescription labels and instructions.

The National Federation of the Blind Tennessee is working to require pharmacies to provide accessible prescription labels to any blind person who requests it. Pharmacies across the state would be required to develop a system to ensure equal access. This legislation (SB1859 HB1999) is sponsored by Senator Becky Massey and has been introduced in the Senate Health Committee. Unfortunately, the bill has met with opposition from pharmacists.

You might not be aware that the state of Tennessee operates pharmacies which are often located within health departments across the state. This legislation would not only apply to your local Walgreens or CVS, but also to the state institutions. As a result of the opposition, the NFBTN has agreed to amend the bill to say that the legislature shall require the Tennessee Pharmacy Board to create regulations and propagate rules for accessible prescription labels in Tennessee. These rules would be developed in another year or so.

“This legislation is important because it impacts the health and safety of blind Tennesseans each time they open and take medication from a bottle that they can not read the label,” said Calvin Poole. “I received a heavy box of medication in the mail and when I opened it up, I found medications prescribed for three other individuals. If I had not had the technology to read the labels, I would have taken medication that was not meant for me and that could have killed me.”

Throughout the years blind individuals have created their own systems of keeping their medications straight. They include marking the bottles in a unique way, remembering the shape of the pills, using pill organizers, creating braille labels, or relying upon others to ensure that they took the correct ones. 

These systems are not perfect but we all made do. One blind Tennessean said “One evening I thought I was taking my calcium supplement. The next morning I took my medication as normal which included taking my calcium supplement in the morning and evening. The next day I started to feel dizzy and light-headed. As it turned out I had mistakenly taken my blood pressure medication in place of my calcium.”

It is because of these stories and hundreds of untold ones that the passage of this legislation is important. You may contact your state representative and tell them your feelings. The NFBTN and disability community will not stop fighting until everyone has equal access to take their prescription medications safely, privately, and can read the labels.

Memphis Rep. Steve Cohen Introduces New Disability Legislation

Representatives Cohen and Clarke Introduce Legislation to Prohibit Discrimination Against People with Disabilities Who Need Long Term Services and Supports

February 28, 2022 Press Release

WASHINGTON -- Representatives Steve Cohen (TN-09) and Yvette D. Clarke (NY-09) today introduced legislation to prohibit discriminatory practices against individuals with disabilities who need Long Term Services and Supports (LTSS).

Despite the Supreme Court’s landmark 1999 ruling in Olmstead v. L. C., that public entities must ensure individuals with disabilities have access to home- and community-based care as an alternative to institutionalization, people today continue to be forced into institutions, including nursing homes and psychiatric hospitals.

The Latonya Reeves Freedom Act would codify existing law and strengthen the right of Americans with disabilities to receive Long Term Services and Supports (LTSS) in the setting of their choice, including a prohibition on government entities and insurance providers from denying home- and community-based services to individuals with disabilities that require LTSS. The legislation is named in honor of Latonya Reeves, a woman who was forced to flee a Tennessee nursing home and move to Colorado so she could access the care she needed to live independently in her own home.

“Latonya Reeves was forced to leave Memphis so she could escape life in a nursing home. Neither she nor any other person should have to choose between getting institutionalized or moving thousands of miles away from one’s community to access the services and supports needed to lead an independent life in one’s own home,” said Congressman Cohen. “Our legislation will codify a person’s right to receive services in the setting of their choice and help protect millions of other Americans with disabilities’ freedom to live and work independently in their own homes and communities.”

“For far too long, people with disabilities have had their homes and lives taken from them through forced institutionalization without any say of their own. No one should lose their freedom for the sake of care, regardless of their disability,” said Congresswoman Clarke. “This legislation is a necessary step towards ensuring people like Latonya Reeves are given the care they need in the communities they know, not the nursing homes they are forced to live in.”

The Latonya Reeves Freedom Act is cosponsored by Representatives Alma S. Adams, Ph.D., Suzanne Bonamici, Jamaal Bowman, Rep. Cheri L. Bustos, André Carson, David N. Cicilline, Gerald E. Connolly, J. Luis Correa, Danny K. Davis, Antonio Delgado, Mark DeSaulnier, Ted Deutch, Lloyd Doggett, Dwight Evans, Brian Fitzpatrick, John Garamendi, Jesús G. "Chuy" García, Raul M. Grijalva, Chrissy Houlahan, Henry C. "Hank" Johnson, Jr., William R. Keating, Derek Kilmer, James R. Langevin, Andy Levin, Lucy McBath, Betty McCollum, Joseph D. Morelle, Seth Moulton, Eleanor Holmes Norton, Ed Perlmutter, Ayanna Pressley, Jamie Raskin, Jan Schakowsky, Debbie Wasserman Schultz, David Scott, Terri A. Sewell, Adam Smith, Greg Stanton, Thomas Suozzi, Bennie G. Thompson, Dina Titus, Rashida Tlaib, Paul D. Tonko, Juan Vargas, and John Yarmuth.

Companion legislation was introduced in the Senate by Senator Michael Bennet of Colorado.

Steve Cohen has been in Congress since 2007. He represents Tennessee’s Ninth Congressional District, which includes Memphis and Shelby County. Cohen is Chairman of the Judiciary Subcommittee on the Constitution, Civil Rights, and Civil Liberties, as well as Co-Chairman of the Helsinki Commission, a senior member of the House Transportation and Infrastructure Committee, and a member of the House Natural Resources Committee

Yvette D. Clarke has been in Congress since 2007. She represents New York’s Ninth Congressional District, which includes Central and South Brooklyn. Clarke is a Senior Member of the House Energy and Commerce Committee, where she serves on the Environment and Climate Change Subcommittee, and is a Senior Member of the House Committee on Homeland Security.

How ACL’s Disability and Aging Network is Responding to COVID-19

The Urgent Need to Vaccinate and Support Older Adults and People with Disabilities

COVID-19 has disproportionately affected people with disabilities and older adults. All people who receive long- term services and supports (LTSS) in the community, regardless of age or type of disability, face a higher risk of COVID-19 infection. Those risks are even greater for older adults and people of color with disabilities.

The Memphis Center for Independent Living, the Administration for Community Living’s (ACL) aging and disability networks are collaborating with state, local, and federal partners to support the need for vaccination of high- risk populations, and to support older adults and people with disabilities in need of community living services and supports. ACL programs are highly engaged with states and other partners working to ensure vaccine access for people with disabilities and older adults, and to provide and improve access to services and supports that address their functional needs so they can remain in their homes and communities.

This document is a summary of ACL’s programs with examples of activities and partnerships that can support access to vaccines and critical services and supports at the community level.

ACL has also created a webpage with vaccination and booster resources for the aging and disability networks.

Major Components of ACL’s Disability and Aging Network 

Centers for Independent Living (CILs)

• Serve individuals with significant disabilities of all types.

  

• There are 354 CILs in communities in every U.S. state and territory. CILs offer the following core services (at a minimum): information and referral, independent living skills training, peer counseling, individual and systems advocacy, transition and diversion from nursing homes and other institutional settings back into the community, and transition of youth to postsecondary life.

• The Memphis Center for Independent Living: Phone: 901-726-6404; email: mcil@mcil.org; website: www.mcil.org. 

• Find a local CIL.

• Vaccine-related activities include coordination of accessible transportation services; assessing needs and status of clients; coordinating services; addressing inaccessible vaccine sites; locating and/or providing mobility equipment, personal care attendant services, or ASL interpreters; educating communities about reasonable accommodations; and providing outreach and education about vaccines and boosters, including addressing hesitancy.

Area Agencies on Aging and Disability (AAADs)

• Serve older adults (age 60+) and family caregivers. A majority of AAADs also serve people with disabilities through other funding sources.

• There are 622 AAADs across the nation, which are public or nonprofit organizations designated by State Units on Aging to address the service and support needs of older adults at regional and local levels.

• The specific names of AAAs vary. To find a local AAA, go to Eldercare.acl.gov or call 800-677-1116.

• AAAs contract with 20,000+ local providers nationwide to provide services and programs that may include congregate and home-delivered meals, information and assistance, evidence-based chronic disease prevention programs, caregiver respite, case management, transportation, homemaker support, and personal care.

• Vaccine-related activities include identifying and reaching out to underserved older adults, including people who are homebound, live in rural areas, or have limited English proficiency; assisting LTSS clients and their caregivers to register for vaccines and boosters; facilitating transportation to and from vaccine appointments; providing second-dose reminder calls and booster outreach; collaborating to combine vaccine delivery with existing home-delivered food services; and organizing and implementing targeted vaccination clinics.

 

Long-Term Care Ombudsman Program

Advocates for people living in nursing homes, board- and-care homes, assisted living facilities, and similar facilities to resolve their individual problems and to bring about changes that improve their care, quality of life, and rights. Find a local LTC ombudsman program.

• Vaccine-related activities include providing information and assistance on how to obtain vaccines and boosters for residents and staff including addressing vaccine hesitancy.

Native American Grantees

• Serve native elders (age determined by each tribe).

• There are 282 Native American Grantees serving over 400 tribes.

• Provide supportive services, nutrition services, and caregiver support to native elders and their families.

• Vaccine-related activities include reaching out to and educating individuals who have not been vaccinated or boosted, partnering to organize transportation to vaccination clinics, and offering case management.

Protection and Advocacy Systems (PandAs)

• Serve individuals with all types of disabilities.

• There are 57 PandAs. PandAs are in every state and territory. There is also one PandA that serves the Navajo and Hopi Nations in New Mexico, Arizona, and Utah.

• PandAs are a nationwide network of congressionally mandated agencies that provide a range of legal advocacy services to protect the rights of individuals with disabilities (e.g., those denied access to a service or an opportunity to take part in an activity). PandAs address allegations of neglect or abuse and conduct monitoring and investigations of facilities. Find a local P&A.

• Vaccine-related activities include contacting people with disabilities to assess status and needs, ensuring vaccination sites are accessible, ensuring access to services, and providing legal expertise to state and federal agencies.

State Councils on Developmental Disabilities (DD Councils)

• Governor-appointed councils of individuals with developmental disabilities, their families, and other key groups.

• There are 56 DD Councils. DD Councils are in every state and territory. They identify gaps in services and implement strategies to address needed system-level changes.

• Find a local DD Council.

• Vaccine-related activities include creating plain language materials; hosting Q&As about vaccines and boosters with local and state agencies, developing vaccine site accessibility checklists, reaching out to and educating individuals with disabilities, and providing information and referral services.

State Grants for Assistive Technology (AT) Programs

• Serve individuals with disabilities of all ages and their families.

• AT programs in every state and territory help make AT devices/equipment and services available. Their efforts range from “low tech” (e.g., built-up handle on spoon to improve ability to grasp) to “high tech” (e.g., computers controlled with eye movement). Other examples of supports are home automation solutions and services to obtain and use devices. AT support can also include assessment, customization, repair, and training.

• Find a local AT program.

• Vaccine-related activities include assisting with accessibility of vaccination sites, registration processes, websites, and outreach materials; supporting vaccination hotlines for people with disabilities; and providing subject matter expertise and technical assistance related to accessibility and AT.

State Units on Aging (SUAs)

• Serve older adults (age 60+) and family caregivers.

• Governor-designated state government agencies that advocate for and assist older adults, their families, and, in many states, adults with physical disabilities. Located in each state and territory. To find an SUA, visit Eldercare.acl.gov or call 800-677-1116.

• Provide funding to AAAs to provide home and community- based services and programs including meal programs, case management, transportation, home care, and caregiver respite.

• Vaccine-related activities include collaborating with state emergency response agencies to identify high-risk communities and support targeted vaccination and booster efforts; working with paratransit agencies, nursing groups, and other partners to identify individuals who might benefit from mobile vaccination clinics; coordinating with state emergency management agencies; providing situational awareness to ACL; identifying gaps and coordinating information; and coordinating with AAAs to restore and limit service disruptions.

University Centers for Excellence in Developmental Disabilities (UCEDDs)

• Serve individuals with developmental disabilities and their families.

• There are 68 UCEDDs nationwide that conduct interdisciplinary training, community services, research, and knowledge translation in a range of areas, including emergency management. Find a local UCEDD.

• Vaccine-related activities include scheduling vaccine appointments for individuals with intellectual and developmental disabilities; working with state Medicaid agencies to support Medicaid-funded transportation to vaccine appointments at non-medical locations, hosting town halls on vaccines for people with disabilities, developing drive-thru vaccination sites, hosting targeted vaccine clinics, and providing vaccinations to group home residents through mobile clinics.

National Hotlines to Support Vaccine Access

ACL, in partnership with the CDC, is funding two national hotlines to connect older adults and people with disabilities to local aging and disability organizations that can assist with vaccine registration, provide services and supports necessary to get the vaccine, and provide access to services and supports that address other community living needs. In addition to English-speaking specialists, both vaccine lines have Spanish-speaking specialists, utilize a language interpretation service for any callers who speak other languages, and provide Video-Relay Service (VRS) for deaf people and people who are hard of hearing.

Disability Information and Access Line (DIAL)

• DIAL helps people with disabilities find vaccination locations in their communities make vaccination appointments and connect to local services – such as accessible transportation – to overcome barriers to vaccination.

• DIAL also can provide information and resources to answer questions and address concerns about the vaccines and can connect callers to information and services that promote independent living and address fundamental needs, such as food, housing, and transportation.

• The hotline is available from 9:00 AM to 8:00 PM eastern time at 888-677-1199.

• Deaf people and those who are hard of hearing can reach DIAL using the 711/Video Relay Service (VRS). To use this free service, simply dial 711 and you will be connected with a communications assistant with whom you can text.

• More information is available at ACL.gov/DIAL.

Eldercare Locator

• The capacity of the Eldercare Locator has been expanded in response to the pandemic to connect older adults, including those who are unable to leave their homes and those who live in underserved communities, to local COVID-19 vaccination resources.

• The Eldercare Locator helps older adults find vaccination locations in their communities, make vaccination appointments and connect them to local services to overcome barriers to vaccination.

• The Eldercare Locator also continues to connect older adults and their caregivers with local aging organizations in their communities for critical supports and services such as home-delivered meals and other nutrition services, transportation, personal care, homemaker support, and respite for caregivers.

• The hotline is available from 9:00 AM to 8:00 PM eastern time at 888-677-1116.

• More information is available at Eldercare.acl.gov.