Spring and Summer 2016:
AT Policy Advocacy Update!

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AT and the ACA: How well do you know your state benchmark plan for habilitative services and devices?


Recent actions by HHS open an important advocacy opportunity

The Patient Protection and Affordable Care Act (ACA), signed into law in 2010, includes provisions that could dramatically advance access to assistive technology (AT) by persons with disabilities. Their impact, however, depends on how they are regulated and implemented and how effective advocacy is to ensure they are meaningful. 
First are protections which bar discrimination based on age, health status, or disability (ACA, Sections 1201 and 1557). Second is the inclusion of habilitative and rehabilitative services and devices as one of 10 essential health benefits (EHB) categories (Section 1302).
The provisions help ensure that individuals with disabilities and chronic conditions can obtain care to not only help them "regain, maintain, or prevent deterioration of a skill or function that has been acquired" (as with rehabilitation), but also to help them "attain, maintain, or prevent deterioration of a skill or function never learned or acquired due to a disabling condition" (federal register defining habilitation). Indeed, the provisions mark an important milestone. 
Prior to the ACA, few private insurance plans provided clear separate coverage for habilitation, and many failed to provide services for pre-existing conditions at all. The ACA requires all small group and individual health plans, both inside and outside of the state exchanges, to incorporate the 10 EHB categories; and it requires that coverage decisions, rates, benefits and other aspects of plan design not discriminate against individuals due to age or disability [1302(b)(4)(D)].
In 2010, Bobby Silverstein, architect of the Americans with Disabilities Act and the Tech Act of 1988, emphasized the significance of the ACA's inclusion of rehabilitation and habilitation services and devices for its potential to help people access AT. In an interview with ATPN following passage of the ACA, Silverstein sounded cautiously optimistic, "We'll see what happens [….] Part of the advocacy, now, is to try to maximize the likelihood that those devices, assistive technology devices, are recognized [….] It's an opportunity for advocacy."

So how are we doing in 2016?

Today, unfortunately, there is not national uniform health insurance coverage under the ACA. One reason, critics argue, is the U.S. Dept. of Health and Human Service’s (HHS) approach to regulating health insurance coverage offerings under the marketplace exchanges. EHBs dictate a minimum scope of coverage only, not the particulars of what is covered or their coverage terms. These specifics vary from state to state, built off yet another baseline: each state's chosen Benchmark Plan.
HHS requires each state to choose a benchmark plan to serve as a model for all other insurance plans offered through the marketplace exchanges. State benchmark plans are mandated to provide coverage equivalent to the typical employer-based plan. For plan year 2014 (the first year of EHB implementation), the states chose from among 10 federally prescribed options, and most drew from existing products offered within their state during 2012 (e.g. one of the largest three small-group plans available). Many of these existing plans, however, did not clearly define habilitative services and devices (after all this was a coverage gap the EHBs sought to fill in the health care market). Others combined habilitation with rehabilitation under the same coverage limits, a problem for individuals who need both kinds of services. Without clear guidelines, insurers were free to define habilitative services themselves. As result, products built off the state benchmark plans risked perpetuating past omissions. 

HHS takes action 

Under pressure from disability organizations and other advocates, in 2015 HHS acknowledged the benchmark plan omissions for habilitation and took action.  In addition to requiring that plans for 2016 and 2017 specifically include habilitative services and devices, HHS issued a final rule which included a uniform definition of habilitation.
The definition clarifies the difference between habilitation and rehabilitation, and requires that states whose benchmark plans do not define habilitative services and devices default to the federal uniform definition as a minimum standard. In addition, the rule calls for coverage for habilitation to be separate from and in parity with coverage provided for rehabilitation by plan year 2017.
States with inadequate benchmark plans could also choose to define habilitation services and devices themselves (through regulation or legislation) using the uniform definition as a minimum standard. States which expand the habilitation definition are not responsible for defraying the cost of any future related premium increases that may result. Many states have sought to take advantage of this opportunity, which is an exception to the state-mandated benefit rule under the ACA.

Diligent advocacy is necessary

Consumer and provider stakeholders, including the Habilitation Benefits (HAB) Coalition have been working to educate state and federal insurance regulators and lawmakers about the differences between rehabilitation and habilitation and what true coverage parity means. Parity is not about providing identical coverage, but coverage terms that are equivalent and based on medical necessity and accepted research. "After all, if a child is not developing the ability to speak," observes HAB Coalition Coordinator Sara Rosta, "they are going to need more speech language therapy services than, say, an adult will typically need to regain speech after a stroke." 
In order to combat access issues and coverage denials, it’s incumbent on State-based disability organizations and other stakeholders to rigorously examine their state's proposed benchmark plan each year. The selection process includes a comment period before the plans are finalized, and HHS's actions in 2015 offer new leverage for advocacy. Consider: does your state benchmark plan specify habilitative services and devices? Is it in compliance with the uniform definition (or with your state's more robust definition)? Is habilitation coverage listed separately from rehabilitation? Are coverage terms provided in parity with rehabilitation, and in line with clinical judgements and research? Are they equal to the typical employer plan? Is the plan non-discriminatory? Benchmark plans for the 2017 plan year were recently finalized, so now is a good time to get familiar with gaps or inadequacies that will require improvement for 2018.
Diligence is also necessary to monitor if advocacy gains achieved one year are continued into the next. So far, this has not always been the case. One example is the 2016 New York State benchmark plan’s policy of one prosthetic per limb per lifetime for adults. The cap is problematic for several reasons: it's not in line with the typical employer plan, is discriminatory against amputees, and would likely negatively impact  health and the ability to perform everyday tasks due to lack of access to prosthetic care (both repairs and replacements were not covered) even in the event of a broken or ill-fitting prosthetic limb. After continuous advocacy, the cap was adjusted mid-year. For plan year 2017, however, NY’s benchmark plan once again includes the one limb per lifetime policy.

Indeed, a full court press is necessary for this kind of systemic change. Advocacy on the state level is common through State Departments of Insurance or insurance providers directly. An example is fighting insurance denials for cochlear implants for children with severe to profound hearing loss, or for coverage of adequate post-implantation therapy services to ensure acclamation and proper development of language skills. Cochlear implants and follow-up care fall under the EHB category of rehabilitative and habilitative services and devices, yet advocacy is often necessary for coverage of the surgery or adequate speech-language therapy sessions. The ACA prohibits plans from applying monetary caps to coverage, but insurers tend to get around that by creating arbitrary caps on the number of visit allowed in a calendar year. 
The HAB Coalition and other advocates are pleased with HHS's final language for the uniform definition of habilitative services as well as changes recently incorporated into the finalized Summary of Benefits and Coverage Template and the Uniform Glossary. Additionally, the HAB Coalition submitted comments to the Center for Consumer Information and Insurance Oversight  on many state benchmark plans proposed for 2017, pointing out inadequacies in coverage of rehabilitation and habilitation services and devices, to varying degrees of success. 
Individuals who have coverage concerns with their 2016 plans should contact their insurance provider and follow through with an internal grievance process before pursuing their State Department of Insurance or alerting a consumer disability or health advocacy organization. A starting place for State-level disability or health advocacy organizations interested in joining habilitation services and device coverage advocacy effort is to connect with federal-level member organizations of the HAB Coalition

As Bobby Silverstein noted in 2010, establishing meaningful access to habilitative services and devices under the ACA now rests on advocacy. Considering the inconsistencies among the state benchmark plans, it's clear that states with well-informed networks of advocates working together strategically are likely to achieve the most success. 

Additional resources:

Essential Coverage: Rehabilitative and Habilitative Services and Devices (ASHA's advocacy guide)

Implementing the Affordable Care Act: Revisiting the ACA's Essential Health Benefits Requirements (The Commonwealth Fund)

Technical Assistance for States to Design Essential Health Benefits Packages for “Rehabilitative and Habilitative Services and Devices" (HAB Coalition)

Habilitation Benefits Coalition White Paper

Competitive Bidding and Wheelchair Accessories

A new challenge sheds light on an old problem

Last year, advocates working for better access to complex rehab technology (CRT) encountered an unexpected obstacle. The Centers for Medicare and Medicaid Services (CMS) announced they would apply competitive bidding price information to additional accessories for wheelchairs.  Accessories in this case are not cup holders or bike streamers, but most everything that customizes a wheelchair to its user: seat cushions, backs and headrests, power and tilt controls--essential equipment that requires a specialist to prescribe and fit. The CMS action, in effect, reduces reimbursements for essential specialized equipment and throws up a new funding hurdle for equipment providers and the individuals who need it.
The issue is frustrating because Congress created an exemption for CRT wheelchairs and accessories from the competitive bidding program in 2008 (the Medicare Improvements for Patients and Providers Act [MIPPA]). MIPPA, however, did not specifically exclude CRT manual wheelchairs and accessories since they were not a part of durable medical equipment (DME) competitive bidding at the time the law was written. Advocates believe CMS's recent action violates the intent of MIPPA as it pertains to CRT. 
"CMS had a right to apply its competitive bidding information to certain types of Durable Medical Equipment," acknowledges Don Clayback, Executive Director of the National Coalition for Assistive and Rehab Technology (NCART). "But the pricing information they have ignores the 10% of users who need more than just a standard headrest." Specialized accessories, he explains, are more configurable, more durable, cost more, and yet they are included under the same CMS reimbursement code as standard accessories.
CMS held its position despite broad bipartisan Congressional support for rescinding the accessories policy. Corrective legislation was sought only after letters signed by over 100 representatives and 23 senators produced no results with CMS. "This is really a very straightforward issue; the facts speak for themselves, and yet CMS has not been willing to make a change," Clayback asserts. "I think the problems that we've had with getting this policy changed has really illustrated to Congress how challenging it can be to work with CMS."
For years NCART has been advocating for improved access to CRT and has been gathering support for a comprehensive bill that would protect complex rehab technology from this sort of  CMS action/misinterpretation. That bill creates a separate benefit category for CRT, supports reimbursements for customization and other specialized services, and establishes industry supplier standards. Clayback acknowledges the accessories issue has been an unhappy distraction from this larger effort, but the potential impact to the community of CRT providers and users was too dramatic to ignore. As result, NCART is now seeking passage of two bills that operate in tandem with one another: HR 1516 Ensuring Access to Quality Complex Rehabilitation Technology Act; and HR 3229 to Help Protect Wheelchair CRT Accessories.
NCART tweet from April 21st: We're busy demonstrating the difference between CRT and DME on Capitol Hill Today! #HR1516 #S1013 #HR3229 #S2196
The current outdated policy that lumps CRT with DME does not acknowledge the full range of services required (follow up care, repair, etc.) or the range of equipment complexity; it could lead to limited product choice and fewer services. Already the number of qualified CRT providers is shrinking. (from the Winter 2014 ATPN)
"The good news is that because of the CMS action, Congress is paying attention to CRT," Clayback says. Indeed, Congress passed a bill at the close of 2015 calling on CMS to temporarily delay the application of competitive price information to accessories for a year (legislation that CMS has since stated is impossible to implement for six months). So now advocates seek a permanent fix;  HR 3229 removes these CRT accessories from competitive bidding altogether. "We're telling Congress we appreciate the increased attention they've been giving complex rehabilitation technology. We're thankful for the bill they passed bill at the close of last year for temporary relief for the accessory issue. But now we need Congress to pass permanent fixes to protect access to CRT. Those permanent fixes are HR 3229 and HR 1516."

What's New with the ABLE Act? 
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ABLE accounts promise to be a powerful new tool for meeting disability-related needs...So what’s new with the program’s roll out?

More than 40 states have now passed legislation  

Under the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act, states may establish ABLE savings programs but first they must pass state-level legislation that aligns with the federal law. As result, state ABLE savings programs are now in different stages of development; more than 34 states have passed enabling legislation; and only Idaho has yet to introduce an ABLE bill. Check your state’s progress.

Savers may open their ABLE account anywhere

In December, Congress eliminated the state residency requirement on ABLE accounts (as part of the Consolidated Appropriations Act of 2016). Now enrollees may open their ABLE account in any state with an operating ABLE savings program. This is important because total account limits, minimum account requirements, fees, investment options and other program features will vary from state to state. Comparison shopping is advisable and if a resident's home state is slow to get an ABLE saving program operational, they can start saving sooner elsewhere (residents in Idaho take notice!)

ABLE accounts will be available this summer

According to the ABLE National Resource Center, several states are on track to offer ABLE savings programs as soon as this summer. These include Florida (in state only), Michigan, Nebraska, Ohio, Tennessee and Virginia. Sign up for ABLE Alerts to stay posted on options.

Pennsylvania removes Medicaid clawback 

Individuals and families who plan to save for long-term expenses may consider waiting for Pennsylvania’s ABLE program to become operational. Unlike the other states, PA’s legislation (enacted April 2016) removes ABLE’s Medicaid clawback provision. The clawback allows Medicaid to seek reimbursement for medical expenses from unexpended ABLE funds in the event a beneficiary passes away. The PA ABLE program removes this risk altogether. Learn more about Pennsylvania’s ABLE legislation.

In addition to understanding the Medicaid clawback, individuals and families who plan to save for substantial long-term needs should also weigh ABLE account limits and restrictions. Account limits will vary by state, mirroring existing education-related 529 account limits. In Vermont, for example, the limit is $352,800, but in Michigan it’s $500,000. Savers will also want to compare the pros and cons of ABLE accounts with trust options. Read more about Trusts vs. ABLE accounts

State tax credits/deductions may also be provided 

ABLE account holders will earn tax-free growth on savings, and they may also be eligible for tax credits and or deductions for their contributions. As of this writing, states that will provide tax deductions or credits for ABLE contributions include Michigan, Oregon, Montana, Utah and Wisconsin (Pennsylvania has a pending bill). 

Fewer hoops for enrollees and administrators 

In response to comments and testimony on proposed federal ABLE regulations, the US Treasury Dept. eliminated the requirement for medical documentation of a disability at enrollment.The notice of interim guidance released in November instead requires applicants to certify they have a qualifying diagnosis (under penalty of perjury). The notice also relieves program administrators from having to categorize how ABLE funds are spent or from obtaining tax payer identification numbers from all ABLE account contributors (except in the case of an excess contribution). This is good news for ease of administration and reducing the cost of the program.

Amendments introduced to enhance the ABLE Act

ABLE accounts could become available to many more persons with disabilities as well as serve as a better long-term savings tool. On March 17th, 2016, three bills were introduced with bipartisan support to amend the ABLE Act: 

The ABLE Age Adjustment Act raises the age limit of disability onset--for the purpose of qualifying for an ABLE account--from 26 to 46. 

The ABLE to Work Act allows an ABLE account holder with earned income to save beyond the $14,000 annual limit, up to the Federal Poverty Level (currently an additional $11,700). The funds would be eligible for the federal Saver's Credit, a tax credit for low and middle-income persons contributing to a retirement account.

The ABLE Financial Planning Act allows families to rollover education-related 529 accounts to ABLE accounts (529A accounts), up to the annual maximum limit. This may be useful should a student experience onset of a disability. The bill also allows ABLE accounts to roll into 529 education-related accounts should a beneficiary no longer have a disability.

Learn More 

Compare state programs and learn more about the ABLE Act and ABLE planning at the ABLE National Resource Center.

Read the Burton Blatt Institute’s white paper:  “ABLE Accounts: A Down Payment on Freedom,” by Michael Morris, Christopher Rodriguez, and Peter Blanck. Published in March 2016, the paper examines the potential effect of ABLE on future disability policy and program development, and makes recommendations for ABLE program design and implementation. 

Find state webpages dedicated to ABLE programs

Device (SGD) 

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Medicare redefines "speech"; covers eye gaze; delays capped rental


In 2014, shock waves hit the SGD/AAC community when several new policies threatened to impact quality of life for vulnerable persons with complex communication needs. Vendors were informed that the speech generating devices (SGDs) eligible for Medicare coverage would be limited to face-to-face communication capabilities; beneficiaries would have to rent SGDs for 13 months prior to ownership (under "capped rental"); and eye-gaze access may not be covered at all. After more than a dozen years of relatively smooth sailing with Medicare's treatment of SGDs, users, providers and vendors faced a series of daunting obstacles to obtaining the technologies that can transform communication and dramatically break isolation for those who need it most.

Amy Goldman caught us up on the nitty gritty of  these issues in the Winter 2014 ATPN, and described actions taken by the advocacy community and Congress. At the time of her article, Medicare was taking comments on a draft National Coverage Determination (NCD) for SGDs and the Steve Gleason Act was making its way through Congress. The result of that advocacy, and the subsequent outpouring of feedback to Medicare and Congress, was remarkable. "We have achieved great success," Goldman told a room of interested stakeholders in February at ATIA 2016 in Orlando. "Over 2000 comments were received by CMS [Medicare]. Indeed, we proved we are NOT a voiceless community."

Here's what was accomplished:

Medicare now recognizes "speech" beyond face-to-face communication.

Medicare's final NCD for SGDs (issued July 29th, 2015) recognizes remote communication as speech. In addition to speech generation, SGD covered features  now  "include the capability to generate email, text, or phone messages to allow the patient to 'speak' or communicate remotely…." 

Medicare now allows SGDs to have additional non-covered capabilities.

With this NCD, Medicare has codified what had been their practice with covering SGDs prior to 2014. SGDs must be used primarily for the purpose of speech generation and arrive designed to function solely for speech at the time of initial issue. However, non-covered-by-Medicare features may be "unlocked." Users who pay an additional fee (and sign off on a standard Medicare ABN form) may "unlock" non-speech related features… and enjoy Skype, ebooks, music and games, etc.

Medicare-covered accessories include eye-tracking aids.

The Steve Gleason Act (signed into law July 30th, 2015) amends the Social Security Act to provide coverage for eye tracking accessories for speech generating devices. In addition, ASHA reports that regional Medicare policies state all accessories for SGDs are covered when medically necessary and reasonable. These include eye tracking aids, head control mice, alternative input devices, key guards and the capacity to control from a power chair's drive control (but not the labor for installation).

SGDs are no longer covered under "capped rental" and may be owned by the user.

The Steve Gleason Act of 2015 also temporarily removed SGDs from the Durable Medical Equipment (DME) category requiring coverage through "capped rental." Devices acquired from October 1, 2015 until October 1, 2018 are exempt. This ends the risk that individuals may lose access to their SGDs when they enter a nursing facility or hospice and allows for a purchase option.

So are iPads covered?

Yes, sort of. iPads are covered, but only as provided by Medicare-qualified suppliers. These are devices from AT companies (such as AbleNet, Saltillo, etc) built on the iPad (or another tablet's) platform, with non-covered features locked for initial delivery. Computers and tablets made for the mainstream are not covered.

What else has changed?

Not much. As before, how a report supporting medical necessity is written matters! Vendors must prove client eligibility and one appeal can delay procuring a device significantly. The narrative must show that a person has a severe speech impairment as well as document that this device matches their particular medical need. Learn more at the Patient Provider Communication website

Keep up to date on SGD funding issues at 
ussaac.org and 

In the News:

Kevin and Avonte's Law Clears Senate Judiciary Committee


The bill funds voluntary tracking technology for persons at risk of wandering due to their disability

On April 14th, 2016, Kevin and Avonte's Law of 2016 (S. 2614) passed out of the Senate Judiciary committee for consideration by the full Senate.

The bill addresses the problem of wandering by individuals with Alzheimer's disease and children with autism or a developmental disability. It provides $2 million annually for five years through the U.S. Dept. of Justice (DOJ) for a range of efforts including the creation of  voluntary "locative tracking technology programs" by state and local law enforcement or other public safety agencies. 

In addition. DOJ grants fund:
  • Wandering prevention and response information, education and training for school administrators, staff, and families or guardians.
  • Education and training to first responders, schools, clinicians and the public for rescue, recovery and safety of persons at risk of wandering
  • Emergency notification and communication programs (like Amber Alerts) to locate missing family members.
A version of the bill was first introduced by U.S. Sen. Chuck Schumer (D-NY) in 2014. Among the co-sponsors for this year's bill is Sen. Chuck Grassley, (R-Iowa), chair of the Senate Judiciary Committee.

The bill reauthorizes and expands the Missing Alzheimer's Disease Patient Alert Program (of the 1994 Crime Bill). It also amends the Missing Children's Assistance Act. Privacy protections as well as standards and best practices for use of tracking devices are included.

Read the full bill.

More Feedback Sought for Long-Awaited Section 508 Refresh

On May 9th, 2016, the U.S. Dept. of Justice (DOJ) re-opened the public comments period for its proposed regulations on ADA Title II website accessibility. The new Supplemental Advanced Notice of Proposed Rule Making (SANPRM) is now taking comments until August 8th, 2016.

DOJ action on Web accessibility first began in July of 2010 with an Advanced Notice of Proposed Rule Making. Comments closed January 21st, 2011 and a Notice of Proposed Rule Making (NPRM) was released December 2014. This NPRM was discarded on April 28th, however, so the rule-making process could start over.

Explaining this action, the DOJ references the advancement of technology:

Since the ANPRM was first announced the Internet, accessibility tools, and assistive technologies have evolved. They have become more available, less expensive, and more widely used. The Department expects that, in addition to being more current, the public comments on the SANPRM will be more detailed and focused than those received in response to its original 2010 ANPRM. 

Read the DOJ's complete statement for this decision.

The DOJ seeks input on over 120 different questions regarding how the Department should implement Web accessibility regulations.

Read the official notice and submit comments.
Reminder: AT Program News, the RESNA Catalyst Project and the Administration on Community Living (ACL) make no endorsement, representation, or warranty expressed or implied for any product, device, or information set forth in this newsletter. AT Program News, RESNA Catalyst, and ACL have not examined, reviewed, or tested any product or device referred to in this newsletter.
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