Posts Tagged ‘Active American Mobility’

Researchers reportedly regenerate adult spinal cord tissue

Wednesday, October 19th, 2011

The following originally appeared in Action Online, the magazine of the United Spinal Association.

Researchers for the first time have induced robust regeneration of nerve tissue connections in injured adult spinal cord sites that control voluntary movement. These findings provide hope that it may be possible to design therapies for paralysis and other impairments of motor function arising from spinal cord injury.

In rodent studies, the Children’s Hospital Boston, UC Irvine, and UC San Diego team made this breakthrough by turning back the developmental clock in a molecular pathway critical for the growth of nerves in the corticospinal tract. The corticospinal tract is a bundle of nerves connecting the brain and spinal cord. While some degree of nerve regeneration has been achieved in other regions of the mature central nervous system (CNS), adult corticospinal nerves have been particularly resistant to regeneration after injury.

The corticospinal nerve regeneration was achieved by deleting PTEN, an enzyme that acts as a critical brake on cell growth. One of the key growth molecules whose activity can be reined in by PTEN is mTOR. In early stages of life, PTEN activity is low, allowing mTOR to promote developmental growth processes. In later stages, PTEN activity is increased and mTOR activity is decreased so that growth is more restricted.

In looking at how to restore early developmental-stage cell growth in injured CNS tissue, Zhigang He, a neurology associate professor at Children’s Hospital Boston–working with Mustafa Sahin, also of the Children’s Neurology Department–showed in a 2008 study that modulating the PTEN/mTOR pathway enabled regeneration of new connections from the eye to the brain after optic nerve damage. He is now partnered with Oswald Stewart from UCI and Binhai Zheng of UCSD to use the same approach to induce nerve regeneration in injured spinal cord sites. Results of their study appear in the Aug. 8 online edition of Nature Neuroscience.

“Until now, such nerve regeneration has been impossible in the spinal cord,” says Oswald Steward, anatomy & neurobiology professor and director of the Reeve-Irvine Research Center at UCI. “Paralysis and loss of function from spinal cord injury has been considered untreatable, but our discovery points the way toward a pathway to develop a therapy to induce regeneration of nerve connections following spinal cord injury in people.”

Indiana (doesn’t) want me? Parents of disabled may wonder

Wednesday, October 19th, 2011

This article, written by Ken Kusmer, appeared in the Oct. 28, 2010 edition of, the Indianapolis Star’s online edition.

Indiana’s budget crunch has become so severe that some state workers have suggested leaving severely disabled people at homeless shelters if they can’t be cared for at home, parents and advocates said.

They said workers at Indiana’s Bureau of Developmental Disabilities Services have told parents that’s one option they have when families can no longer care for children at home and haven’t received Medicaid waivers that pay for services that support disabled people living independently.

Marcus Barlow, a spokesman for the Family and Social Services Administration, the umbrella agency that includes the bureau, said suggesting homeless shelters is not the agency’s policy and workers who did so would be disciplined.

However, Becky Holladay of Battle Ground, Ind., said that’s exactly what happened to her when she called to ask about the waiver she’s seeking for her 22-year-old son, Cameron Dunn, who has epilepsy, autism and attention deficit hyperactivity disorder.

Holladay, a school nurse, said she and her husband would go bankrupt trying to pay for services themselves, so Cameron spends most days sitting in his stepfather’s truck while he works as a municipal employee.

“It’s heart-wrenching as a parent to watch it. We are people and they are people,” Holladay said, referring to her son and others with disabilities. “They have lives that are worth something.”

There have been no confirmed cases of families dumping severely disabled people at homeless shelters because Indiana wouldn’t provide the care needed.

But some families have been on waiting lists for waivers for 10 years. The lists contained more than 20,000 names last month, and one advocacy group predicted they will only grow longer because Gov. Mitch Daniels ordered budget cuts that have eliminated 2,000 waiver slots since July.

Budget cuts also have resulted in the state moving foster children with disabilities to a lower cost program that doesn’t provide services for special needs and eliminating a grocery benefit for hundreds of developmentally disabled adults.

Kim Dodson, associate executive director of The Arc of Indiana, said her group has received reports of state workers in several of BDDS’s eight regional offices telling families to take disabled adults to homeless shelters. She speculated that the suggestion resulted from frustration among BDDS staff as families become more outspoken about the effects of state cuts.

“It is something we are hearing from all over the state, that families are being told this is an alternative for them,” Dodson said. “A homeless shelter would never be able to serve these people.”

State lawmakers said they also have received reports from several people who were told they could always abandon their adult children at homeless shelters.

Rep. Suzanne Crouch, R-Evansville, said she found it “deplorable that people are being told to go to a homeless shelter.”

Leaders of several agencies serving homeless people across Indiana could not be reached for comment after business hours Wednesday.

Some parents said homeless shelters have also been suggested — or threatened — as an option by private care providers.

Daunna Minnich of Bloomington said Indiana Department of Education funding for residential treatment for her 18-year-old daughter, Sabrina, is due to run out Sunday. She said officials at Damar Services Inc. of Indianapolis told her during a meeting that unless she took Sabrina home with her, the agency would drop the teen off at a homeless shelter.

Sabrina, who’s bipolar and has anxiety attacks, has attempted suicide, run away during home visits and threatened her older sister, Minnich said. Bringing Sabrina home isn’t a viable option, but the two group home placements BDDS offered weren’t appropriate, she said.

“I don’t want to see the state of Indiana hasten her demise by putting her in a one-size-fits-all solution that will drive her to desperate acts,” Minnich said.

Jim Dalton, Damar’s chief operating officer, said he could not comment directly on any specific case but his nonprofit would never leave a client at a homeless shelter — even though it is caring for some for free after they got too old for school-funded services and haven’t yet been granted Medicaid waivers.

“We’re talking about youth that absolutely require services, and no one is willing to fund them anymore,” Dalton said.

Planning for ‘Growability’ in Pediatric Seating & Mobility

Wednesday, October 19th, 2011

Among the most difficult tasks for assistive technology professionals is to assess a client today and then accurately predict what equipment that client will need a year, two years or even five years from now. And making those estimates can be even more difficult when the client in question is an infant, child or adolescent with a disability.

Nevertheless, funding sources typically expect pediatric seating & mobility to fit and serve a child for several years, which puts pressure on the rehab team to choose technology that will be appropriate today as well as tomorrow.

This kind of prediction isn’t an exact science, of course, but here are some factors to consider when putting together a “growable” pediatric system.

Independent or Dependent Mobility?

For some of your pediatric clients, independent mobility won’t be possible. But for many others, especially the youngest ones, selfpropelling or independent driving will be possible — if not immediately, then eventually. Therefore, one of the crucial first questions facing parents and the seating & mobility team is whether to pursue a manual or a power chair that the child will operate himself, or a stroller-type of chair that will be pushed by a caregiver.

Parents who are still working to understand a disability diagnosis may find it difficult to accept a wheelchair recommendation or may fear that using a wheelchair could discourage the child from learning to walk. In other instances, the family home, environment or lifestyle may preclude independent mobility under the present circumstances.

On the other hand, multiple studies have indicated there are many social, emotional and cognitive benefits to providing independent mobility at as early an age as possible — even if the child does eventually walk independently.

Some studies have shown that as with language acquisition, there is an optimum “window” for a child to learn to move independently, and that window corresponds with the age that infants naturally begin to crawl, stand and walk.

Research seems to indicate that giving young children with disabilities the same opportunity to explore can have a powerful effect later in life.

Building in Growability

Whether the child will be self-propelling, independently driving or using a caregiver-operated mobility device, building growth potential into the seating & mobility system is imperative.

That generally means being able to accommodate increased seat widths and depths, which can also lead to adjusting the location of the seat on the base, changing seat-to-floor heights and needing a longer frame as well.

While many seating & wheelchair manufacturers offer “growth kits” — with some offering the first one free of charge — it’s also important that those growth kits or other parts needed to grow the systems are readily available when you need them. Therefore, it’s wise to work with vendors who can deliver the parts or kits in a timely manner…since growing kids wait for no one!

Once you’ve made the seating or mobility system growable, make sure the entire team — parents, clinicians, techs and other provider staff working with the family — understand all the adjustments that are possible and how to implement them. After all, growth kits are at their best when they’re fully used.

The Importance of Adjustability

In pediatric seating & mobility, adjustability is key. For instance, with young and/or small clients who will be self-propelling, consider wheelchairs capable of switching between standard and reverse configurations. Your littlest self-propellers can start out with the drive wheels (i.e., the rear wheels) moved to the front, where the wheels and pushrims can be more easily reached, grasped and pushed.

Once the child grows taller, the drive wheels can be moved to the standard rear position for conventional self-propelling. Another area where adjustability could help: upholstery. If it’s a viable option for your young client, adjustable-tension back upholstery could “grow” the width of that initial wheelchair back without having to actually swap backs.

For families seeking growability and adjustability of function as well as sizing, some pediatric seating & positioning systems are capable of detaching and reattaching to manual or power bases as needed. That flexibility can be helpful for transportation or if the child needs the seating system to function in multiple environments.

Some manufacturers also make seating & positioning systems that can be swapped among different wheeled and nonwheeled activity bases, such as those used for schoolroom use, feeding or grooming.

Working with children who have disabilities will always include some potential element of surprise when it comes to anticipating growth. Depending on their medical conditions, family histories and individual biology, some children will grow taller but not much wider.

Others will grow wider before they grow much taller, and some children will grow both taller and wider. Creating optimal seating & mobility systems, therefore, requires careful planning beforehand, with all members of the team communicating effectively to understand the child’s goals and to tackle growth-related challenges before they come up…as well as along the way.

Why the ‘Separate Benefit’ Effort Should be Supported

Wednesday, October 19th, 2011

As Laurie Watanabe, editor of Mobility Management magazine, writes in her “Liberating Complex Rehab” column, an effort to secure a separate benefit for complex rehab technology seeks in essence to more accurately identify and define both the types of equipment used by severely involved seating & mobility clients, and the clinicians and suppliers conducting the evaluations, fittings, fabrications, adjustments, client training, and service/repair. This is part one of Watanabe’s column on why the separate benefit effort should be reversed.

There is danger in being labeled something you’re not — witness the 9.5-percent Medicare funding cut to the complex rehab power category after it was carved out of future Medicare competitive bidding programs.

#1: It’s time to stop comparing apples to oranges.

It’s an old, but entirely true argument: Complex rehab technology is different than DME.

“The big picture is that complex rehab technology is a small segment of the home medical equipment marketplace, and it is used by people who have in the majority of the cases very significant disabilities,” says Don Clayback, the new executive director of the National Coalition for Assistive and Rehab Technology.

“That’s why they need this kind of equipment.”

Complex rehab is currently considered merely a type or form of DME, which means its unique factors are often overlooked or not understood. Case in point: After intensive lobbying and education efforts from the industry, complex rehab power chairs and accessories were deemed inappropriate for Medicare competitive bidding and were thus carved out of future programs. Yet, when it was time to “pay for” a July 2008 postponement of the program, complex power was included in the 9.5-percent funding cut along with the rest of the product categories involved in the failed Round 1.

“What we see happening over the last few years,” Clayback says, “is because there’s really a lack of understanding of what’s involved in this from a payor perspective or a policy-maker perspective, there’s not the necessary appreciation of the complexity of the products, the service component of the delivery model and the costs that are incurred in that process. There’s not enough awareness of that, so consequently — whether it’s coverage changes or cutbacks or competitive bidding discussions — these products get included in there, and really they’re not appropriate based on those dimensions I mentioned.”

So if complex rehab technology is not DME, what is a good comparison? Possibly orthotics and prosthetics (O&P), Clayback says, “at least to communicate what we’re trying to accomplish.” He points out that O&P is “a separate category within the DME benefit. Orthotics and prosthetics are treated differently because they’re individual to the user of the equipment; they require evaluation, assembly and fitting; and they require ongoing support.”

#2: This lack of distinction is hurting complex rehab providers and consumers.

It’s easy for payors, referral sources, consumers and other stakeholders to contend that the separate benefit is largely about increasing funding for complex rehab. But the fact is that defining complex rehab as a slice of the larger DME pie ultimately hurts consumers. “When we see coverage changes or coverage limitations or when we see cutbacks, that’s eroding access to this technology,” Clayback says.

“From a supplier perspective, I think it’s well recognized that this segment isn’t a real attractive segment from a business perspective because it’s very service intensive, the profit margins are low, and the paperwork requirements are significant. From a pure business perspective, there’s a lot of challenges, which means there’s less companies that are remaining in this business. As those companies decrease, the patient access decreases. As those companies are forced to undergo ongoing reductions, they have to limit either product choice or limit services. They might not be able to continue to provide them under continued rate reductions.”

So, sure — providers’ businesses are being hurt. But ultimately, having fewer complex rehab businesses in existence will hurt the consumers who need the technology and all the expertise and service that goes along with it. Referral sources will also feel the frustration, if they have fewer qualified complex rehab professionals to call upon.

When it comes to the connection between funding problems and accessibility problems, Clayback explains, “I would say there’s a straight line — it’s not a dotted line, it’s not even a long line. If there is a reimbursement problem, that translates into an access problem. Or at least on the surface, immediately the access (question) should come up.

“When you look at complex rehab technology, we’ve done studies through NCART and there’s a variety of information that’s available. When you look at other segments in the market, the number of companies that provide complex rehab technology is very small, and that number is decreasing. So I can show you all kinds of financial reports and flow charts and all the steps that are involved, but this is a very difficult market to operate in, and I don’t think there’s any better evidence than to say, ‘Look at the few companies that are still operating in this business.’”

#3: This effort means no disrespect to DME.

Establishing a separate category for complex rehab isn’t a matter of having no respect for the existing DME benefit, but rather a matter of making sure complex rehab is defined and understood as accurately as possible.

“There definitely is a place for durable medical equipment,” Clayback says. “There’s definitely a place for respiratory equipment, so I think those are well-recognized product categories. What we’re saying is that when you start making decisions on coverage policy, payments, whatever, having these specialized (complex rehab) products lumped in with other categories presents some real access problems.”

#4: Complex rehab technology would finally be clearly defined.

Up until now, complex rehab technology has too often been defined in the eye of the beholder. Yes, Medicare made some inroads in separating consumer and complex rehab power chairs, but overall, it’s still an incomplete, overlapping and somewhat vague definition. For example, skin-protection and positioning wheelchair cushions were part of the recent Round 1 rebid as part of a category that Medicare calls Complex Rehabilitative Power Wheelchairs & Related Accessories — Group 2.

But with the new benefit category would come, finally, very specific definitions.

“We have clearly defined what complex rehab is,” Clayback says. “First, we started with more of a broad definition. We have crafted the definition so it isn’t just restricted to seating & mobility.”

In brief, Clayback says complex rehab would be defined as “an item that’s medically necessary, that’s configured to the individual and requires a combination of specific activities: evaluation, assembly, fitting, training, ongoing support.” The definition goes on to list the diagnoses of patients who typically use this type of equipment.

“Here’s the products, and here’s the people that use it,” Clayback says.

A more-detailed, two-page working definition includes what Clayback calls the “four Ps — the products that we’re talking about, the people who use it, the process that’s involved, and the professionals that are part of the delivery model.” The initial focus is on seating & mobility, plus “other adaptive equipment — standers, gait-trainers, other kinds of specialized equipment that fall under that definition.” But Clayback adds, “Speech-generating devices and other assistive communications devices would potentially fall under that. We’ve had some initial discussion with those groups, and they’re interested in this. They may become part of it or look to be involved down the road at some point.”

To identify the specific products that meet this new definition, Clayback says, “We’ve taken specific HCPCS codes — about 130 of them — that are either strictly complex rehab, or a significant part of that product code is complex rehab. One of the things we’d like to fix is for certain codes there’s an overlap: You have complex rehab products and standard mobility products. They both have a purpose and they both have a benefit, but for these specific HCPCS codes, you have to be an accredited complex rehab provider to provide them.”

#5: A seating & mobility client’s world should be made up of far more than four walls and a roof.

Once upon a time, the phrase “in the home” was used to distinguish durable medical equipment used in a Medicare beneficiary’s home from equipment used in a hospital or healthcare facility setting.

But that was a long time ago, and somewhere along the way, “in the home” morphed into a Centers for Medicare & Medicaid Services (CMS) restriction, one that perhaps inadvertently, but very effectively limited the definition of a Medicare beneficiary’s living spaces.

“We feel that, inappropriately, CMS interprets some of the language in the Social Security Act that says equipment is only covered in the home,” Clayback says. “We’re looking at eliminating that relative to complex rehab technology.

“If someone needs a power wheelchair, they should be able to access the necessary equipment, not just for their home needs, but also to get out into the community for their medical needs, social needs, educational, work and other needs. And really, our stated objective for this category is to improve and protect access for people with disabilities that need these products.”

Long the bane of complex rehab consumers, the in-the-home restriction might help stir consumer interest in the industry fight to establish a separate benefit category.

“The consumer is really the focus,” Clayback says, “and we’ve had some very productive discussions. I think this gives us the opportunity to have a stronger connection with consumer groups and have some frank discussions.” (Example: Paul Tobin, president of United Spinal Association, is a separate benefit category steering committee member.)

Discussions, Clayback adds, would concern how the status quo — complex rehab technology lumped in with DME, and dwindling numbers of complex rehab providers — is impacting consumers’ freedom of choice.

“If I’m a consumer…I want a company that’s got a good selection of products, that’s going to give me good customer service, and is going to be around if I need some sort of support,” he notes. “I think we all realize that for those companies to exist, the business environment has to be such that there’s appropriate coverage policies and payment rates.”

And speaking of payment rates: Next month, in part two of this column, we discuss three more reasons to support the separate benefit effort, including the role that funding will play, the need for new complex rehab technology provider standards, and the project’s various work groups, which are tackling this effort from several critical angles. Plus, we’ll share ways that you can get plugged in and help drive this meaningful effort.

The Social Security Determination

Wednesday, October 19th, 2011

Blogger Tim Moore explores how Social Security works with regard to those facing disability issues.

Social Security Disability (SSD) is awarded to individuals who file disability applications who can prove A) they have a severe, ongoing medical condition, and B) this this condition prevents them from being able to earn a living, either at a job they’ve done in the past, or at some form of other work for which they might possibly be suited based on their age, education, skills, and functional capacity.

Social Security makes all SSD determinations based on these core issues, closely examining claimants’ medical records and work histories in the process.

When you first file for SSD you will meet with a Social Security claims rep (called a CR) in a local social security office, who takes disability applications and then passes them on to the state disability determination services (DDS) agency (where decisions on claims are made by disability examiners).

At this initial interview you should supply the CR with, at the very least, a detailed contact list of any medical professionals or facilities at which you have received treatment for your condition. Be sure to include correct names, addresses, and phone numbers on your medical history–without this information, Social Security may not be able to get your records.

If you can get copies of your medical records before you meet with the CR, so much the better. Many, if not most physicians, are slow to comply with requests for records in disability matters, so providing a complete copy of this information at the time of filing can greatly speed up a decision in your case. Be sure to include records of any licensed medical professional from which you have sought help for your symptoms, not just physicians.

Psychologists, osteopaths, optometrists, and podiatrists, while not M.D.s, are all considered acceptable medical treatment sources by Social Security.

A chiropractor is not recognized as a medical expert by Social Security, but the results of any objective tests the chiropractor performs, such as X-rays, should be included in your case file, as a disability examiner may consider them in his or her decision.

In addition to your medical history, you must povide the CR with a complete, detailed work history of all of the jobs you’ve held in the last 15 years. Your work history is nearly as important as your medical history to the disability examiner who will decide your claim, because even those with obvious severe impairments (such as chronic pain, a debilitating injury, or even loss of limb) may be denied SSD if they cannot prove that their impairment prevents them from performing a past job or any other work at which they could earn the SGA amount.

SGA stands for substantial gainful activity, and if a disability examiner or judge decides that you could still earn the SGA amount you will be turned down for benefits. This, of course, is why it can be very important to have representation, particularly at the disability hearing level. A good disability attorney can address the issue of whether an individual’s condition sufficiently limits his or her ability engage in work activity that was previously performed, as well as address the issue of whether or not it is reasonable to believe that the claimant can switch to some form of other work that they have never done before.