What’s In a Name

A Change is Gonna Come

By Christina Clift

The Memphis Center for Independent Living has been a part of the community since its founding in 1985. Since then, we have worked to facilitate the full integration of people with disabilities into every aspect of community life. But our mission has not been achieved with physical, attitudinal, and socio-economic barriers preventing people with disabilities from reaching their fullest potential. So, we still have work to do.

Unfortunately, many people are under a mistaken belief that the Memphis Center for Independent Living (MCIL) provides housing. That could not be further from the truth. Although we can assist consumers to locate housing, we are prohibited by federal law to own housing. 

When MCIL was founded, we believed that our name would reflect who we are. A center that served the city of Memphis using the Independent Living philosophy which simply means that people with disabilities are the best experts about their needs, be involved in making decisions, and organize for political power. After all, “independent living” had not become a buzz word back then. Now, you see “independent living” everywhere, especially when talking about housing for seniors.

In 2020 just before the pandemic began MCIL embarked on what became a two and a half year strategic planning process. Several changes are targeted to take disability access and our non-profit recognition to the next level. Rebranding our virtual agency is the first piece of a capacity building plan to increase visibility, services, staffing, and financial security. 

A new revitalized mission has started the groundwork to Advocate, Educate and Unite Communities. Over the next months we will be working on our new name and logo. We want the input of the people we serve to help us. 

On June 1st we will begin a contest to create a name that will encompass this organizations true value, service, cross-disability, consumer-directed, community leadership and contributions. A lot to ask from one name but only one piece of a long-needed rebranding campaign. 

Do you have an exciting and innovative idea for our name? 

You can submit your idea by visiting https://forms.gle/nG1JFjNgGcG5V1fH9. 

We look forward to reading your ideas and we thank you for your participation to ensure that MCIL’s new brand is developed using the Independent Living Philosophy.

Medicaid Changes When the Public Health Emergency Expires

ACL Fact Sheet: Preparing for Medicaid Changes When the Public Health Emergency Expires

From the Administration for Community Living:

Government agencies have started reviewing policies that were put in place to meet the needs of states, localities, and the public during the height of the COVID-19 pandemic. When the federal declaration of a public health emergency (PHE) expires, many of the flexibilities initiated during the PHE will need to be rolled back. This return to pre-pandemic operations will have far-reaching impacts for older adults and people with disabilities. 

Changes in Medicaid enrollment and eligibility will be particularly important—and potentially confusing or disruptive—for current enrollees. The aging and disability networks can prepare in advance for the coming changes to best meet the needs of people who rely on Medicaid coverage for essential services and supports.

The Families First Coronavirus Response Act (FFRCA) prohibits states accepting extra Medicaid funding from disenrolling anyone from their Medicaid programs (with limited exceptions) during the PHE. While the Biden Administration has not officially said when the PHE will end, it has assured states that they will receive at least 60 days of advance notice. Upon the end of the PHE, states will have 12 months to evaluate the eligibility of virtually everyone in their Medicaid programs to make sure they still qualify for the program. 

ACL has developed a new fact sheet to help grantees prepare for these eventual changes. The fact sheet describes how FFCRA impacts Medicaid and details five things the aging and disability networks should know:

1. Medicaid beneficiaries should make sure their Medicaid agency has their current contact information. They should check their mail and be sure to mail back any Medicaid forms they receive.
2. All renewal forms and notices must be accessible to people with limited English proficiency and people with disabilities.
3. Many people who are no longer eligible for Medicaid will have other coverage options.
4. If someone is disenrolled or their Medicaid coverage changes and they disagree with their state Medicaid agency’s decision, they can appeal.
5. The end of the Public Health Emergency may lead to an increase in utilization of services provided by Older Americans Act programs, Centers for Independent Living, Assistive Technology Act programs, and other ACL grantees.

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.