The Occupational Safety and Health Administration (OSHA) has published ergonomic guidelines for employees providing physical assistance to patients in nursing homes that we would be wise to take into account in other settings where assistance for mobility is provided regularly.

A Hoyer lift is used for a transfer that requires total assistance.

The first and most significant recommendation is that manual lifting of individuals “should be minimized in all cases and eliminated when feasible.” The National Institute for Occupational Safety and Health (NIOSH) recommends that those directly handling patients should lift a maximum load of 35 pounds. That means once students approach kindergarten size, it needs to be determined how much they can participate in transfers and how much staff assistance is needed. Planning needs to take place regarding provision of more manual or mechanical lifting help when a need is identified.

For those who need total assistance, there are products on the market that allow dependent transfers in a transfer sling and some that mechanically assist transfers in a standing or semi-standing position. Sliding boards can be used for lateral transfers between surfaces of similar height, allowing the individual being transferred to remain in a seated position. For those who can stand with support but have difficulty stepping, transfer discs may offer a helpful solution for challenging transfers.

Improvements in EasyStand product design such as the Swing Away Front and Removable Back available on the Evolv, have greatly simplified transfers using sling-type mechanical lifts. Mechanically assisted transfers in standing can be facilitated by use of the Rotating Seat. The special Transfer Seat is wider at the front, providing more surface area for balance and safety for those performing lateral transfers.

With all transfers:
- Plan ahead – set brakes, remove straps, minimize the distance to be traveled and the height to be lifted
- Use good body mechanics – maintain a wide base of support, lift with legs, and keep spine in good alignment
- Get training – every wheelchair, every transfer device, and every positioning device has its own characteristics that can sometimes serve to make transfers easier and can sometimes require problem-solving with a trusted rehab professional
- Ask questions – as the patient or primary caregiver, you know the most about your day-to-day activities and environment, what works and doesn’t work, and how your body feels

If you have any questions about transfers and transfer devices, please do not hesitate to talk to your physical therapist, occupational therapist, or durable medical equipment provider. The most important person a caregiver can care for is himself or herself to ensure the continued ability to provide care for others.

What transferring techniques do you currently use with your clients?

Katie Hohman, PT, DPT with client Melissa using the EasyStand Glider for weight bearing, strengthening, and endurance.

Melissa has progressed from being wheelchair dependent, to becoming ambulatory with a therapist’s assist. She is using the EasyStand Gilder, a dynamic stander at home for weight bearing, strengthening, and endurance. She requires minimal assist to push and pull the handles of the stander to enable her lower extremities to move in a back and forth motion as well. She uses her upper extremity strength to provide passive movement to her lower extremities. 

John was able to decrease his lower extremity spasticity and improve upper extremity function. John uses the EasyStand StrapStand for weight bearing during physical therapy. This type of stander allows for easy donning of the sling in his wheelchair by his caregiver; John is a dependent transfer, and any other type of stander would require much more assistance to transfer into. When John is in the stander two times per week during therapy, he is assisted to work on gentle upper extremity strengthening and stretching exercises for improvement in overall endurance, flexibility, and spasticity reduction.” 

Sit-to-stand devices provide individuals who are unable to stand and weight bear the opportunity to dramatically reduce risk factors related to inactivity and improve their overall quality of life.  Read more about John and Melissa’s rehabilitiation in “Upstanding Benefits” an article written by their therapist Katie Hohman. Printed in the March Issue of Rehab Management. 

Read More Articles on Standing 

Have you found that standing benefits each of your clients in similar or different ways based on their diagnosis?

• The client is too disabled (Even people who are C1-C2 vent dependent quadriplegics can use the EasyStand)
• The client is not disabled enough (anyone, even active paraplegics, can benefit from standing)
• The client has not stood for several years (start by talking to your doctor, they may want a DEXA scan done)
• The client needs a new wheelchair, so we do not want to jeopardize the funding (a cap on lifetime benefits or durable medical equipment would be the only thing to take into consideration)
• The caregivers will not be able to handle it (there are many different standers and options to help with transferring & compliance)

Not everyone is appropriate for a standing program, but 90% of these reasons mentioned are inaccurate or wrong. We have people benefiting from standing that are ambulatory but they need the strengthening and balance that standing provides. We have others that have little, to no voluntary movement that stand every day. Also, requesting a stander from a funding source has little bearing on getting other medical equipment. Most speculation about how the stander will work out with the family or school is best addressed by bringing them into the evaluation.

If a doctor withheld information from you that could improve your health and alleviate adverse symptoms, you would likely change doctors. Individuals and parents need to have all the care options explained and it is the responsibility of the health care provider to put them all on the table.

Did your perceptions change about who is/is not a candidate for standing? What do you think the greatest misconceptions are?

Who Qualifies?
In the medical or clinical setting a child receives therapeutic intervention based on some combination of physician recommendation, medical diagnosis that tends to have an accompanying motor or sensory impairment, and a therapist’s identification of deficits or delays via evaluation. Some insurance companies require a child to score well below what could be considered an average range of motor ability to be eligible for ongoing therapy.

In the school setting, Physical Therapy and Occupational Therapy are “related services”, deemed necessary when they are required to assist a child with a disability to benefit from special education. It is only appropriate to provide PT and OT to children who qualify for special education services. In order to receive services in a school setting, a child must have unique needs that the team agrees can only be addressed with the particular knowledge and skill the therapy provider can contribute. These needs are agreed upon by the family and educational team and are reflected in the goals and adaptations on the child’s Individual Education Plan (IEP).

How Is Service Provided?
A child is treated in a clinic in an individual or small group session with the therapist. Intervention can be focused on the areas of need identified in the evaluation. Time is set aside periodically to discuss progress with parents or caregivers and make recommendations for home activities to build upon the gains made in therapy.

School-based service must relate directly to the child’s ability to participate in special education and access a free and appropriate public education. The therapist may see the child one-on-one to focus on a skill in an area with fewer distractions. The therapist may see the child as the child participates in the routine activities of the school day. Examples are working on writing in the classroom when the rest of the class is working on writing, working on motor skills in physical education, or working on mobility when all the children are moving from one location to another. The therapist’s role may be primarily consultative. This may include teaching classroom staff about sensory strategies, transfers, body mechanics, positioning, or use of adaptive equipment to maximize a student’s success.

Who Pays?
The family takes responsibility for payment for services provided in the clinic, generally through medical insurance.

Services determined necessary for the child’s participation in his or her special education program are provided free of charge to the family. Costs are covered by the school district or in cooperation with the state’s Medicaid program.

When Does Service End?
Outpatient therapy in the clinic is usually discontinued when a child’s progress plateaus, with the understanding that therapeutic activities will continue in the home to maintain and build upon the gains made in therapy. After a “therapy break” of several months, a child may be reassessed and participate in another round of therapy if the therapist sees potential for progress. This cycle may be repeated multiple times over several years for some children.

School therapy continues as long as the family and educational team agree there is a need for therapist expertise to help the student participate in his or her education and progress toward the goals on his or her IEP. When a child reaches a functional level comparable to his or her peers or the classroom staff are able to implement general strategies to meet the child’s needs, skilled therapist intervention is no longer indicated.

Wherever Therapy is Provided…
We value input from our patients, their families, members of the educational team, and members of the health care team. The common thread is therapists’ desire to help children achieve their maximum possible level of function and independence.

Want more on this topic? Check out these other articles on pediatric therapy on the Capable Kids Clubhouse.

Below is a sample letter of medical necessity for an EasyStand Glider (youth/medium size), graciously shared to us by Lauren Rosen, PT, MPT, MSMS, ATP/SMS. It is also available to download as a PDF.

(Clients Specs – See PDF for more detail)
To Whom It May Concern:

History: D.L. is a 7-year-old with a diagnosis of quadriplegia.  Due to an unknown cause, he has a gap in his spinal cord from C5 to T1.  He is incontinent of bowel and bladder.  His hearing and vision are both intact.

D.L. has decreased trunk strength.  Without trunk support, he is unable to sit.  He can actively move his upper extremities.  He has no active movement of his lower extremities.  Bilaterally, he has ankle clonus and Ashworth 1-2 spasticity.

Currently, D.L. does not have any spinal or pelvic deformities.  His lower extremity passive motion is within normal limits.

Standing has been shown to delay the appearance of contractures and improve those that already exist (1).  Because he lacks the strength to stand, the standing frame will help to keep him in a good position to stretch these muscles for extended periods.  This stretch will maintain and improve his lower extremity range of motion.

D.L. has spasticity throughout his lower extremities.  Standing has been shown to decreased spasticity (2).  Decreasing his spasticity will assist in maintaining range of motion and improving his overall level of function.

Children without disabilities stand between 8-10 months of age.  This standing helps with the forming of the acetabulum (3).  It is very important in children with disabilities to get them standing at a young age.  Because of D.L.’s diagnosis and his spasticity, he is already at increased risk of developing hip subluxation as he grows.  Standing will increase the depth of his acetabulum and decrease his risk of subluxation.

D.L. will benefit from a standing frame that can position him properly in standing. Standing also facilitates better emptying of his bladder, which can decrease his risk of developing urinary tract infections (4)

D.L. is at increased risk of developing osteoporosis due his inability to stand independently (5, 6).  Gudjonsdottir, and Mercer studied the effects of dynamic versus static standing on bone mineral density in children with cerebral palsy. All subjects were non-ambulatory. Half the subjects underwent dynamic standing, the other half static standing. All but one of the subjects showed an increase in bone mineral density in the lumbar spine, proximal femur and distal femur (7).  Additionally, Goemaere et al.9 compared SCI individuals who conducted standing 1 hour, 3 times per week with those that did not. It was found that bone mineral densities were significantly higher in the long leg bones of the standing group (8).

This standing frame will allow D.L. to bear weight through his lower extremities.  Because it is easy to move the frame from a seated to a standing position and it is a dynamic stander, his parents will be able to change his position frequently.  Lanyon and Rubin compared static versus dynamic loads and their influence on bone remodeling in animal models (9). They found that static loads did not have an effect on remodeling where as a similar load that was applied intermittently in a dynamic manner was associated with a substantial increase in bone mass. The dynamically loaded group instead of bone loss demonstrated a mean increase in bone cross-sectional area.

Kawashima, Nakazawa, and Akai performed a study to see if passive leg movement in standing was sufficient to improve the oxygenation of lower limb muscles in populations with SCI (10). They compared SCI patients to neurologically normal controls. Passive movements were performed at different frequencies for 3 minutes each and then EMG activity and oxy and deoxy hemoglobin were measured. They discovered that passive leg movements did induce not only EMG activities but also an increased oxygen perfusion to the muscle in SCI populations whereas the controls showed no changes. This study demonstrates a significant benefit to individuals like D.L. for dynamic standing.

With the glider, he will get dynamic loading of his bones rather than just static loading.  Research has shown that more dynamic weight bearing results in less of a loss in bone mineral density (11).  This will provide him with the maximal benefits from standing.

The other benefits of standing are well established.  In addition maintaining his lower extremity range of motion, which is important for him, a standing frame has many benefits.  Standing has been shown to improve circulatory, gastrointestinal, bowel and bladder, and respiratory functions (3,4).   Walter et al. sent questionnaires to individuals with SCI who had purchased standing frames from two different companies (12). The data was analyzed for perceived benefits. These included improved quality of life, decreased urinary tract infections, and decreased spasticity among others. Those that stood greater then half an hour per day and a statistically significant improvement in secondary complication rates. They also quoted a study by Warren et al. that showed that compliance for standing with frames or tilt tables is greater than compliance for standing with KAFO’s in the home environment.

D.L. cannot move himself independently to shift his weight.  This puts him at an increased risk of developing decubitus ulcers (4).  People who stand for at least 30 minutes a day have less pressure sores than those who do not stand (12).

Current Program and Standers Considered:

At this time, D.L. has an EasyStand Magician stander.  He uses the stander daily. Because of the good trunk support, he uses it while he works on different reaching activities, such as turning pages in books and playing with toys.

His mother transfers him independently at home and she continues to need a standing frame that can be operated by only one person.  It would be unsafe and impractical to try to lift and position him into a prone or supine standing frame.

D.L. has outgrown this stander.  Without a new stander, he will not be able to continue his standing program.  As a sit-to-stand stander remains the most appropriate type of stander for him, this is the least costly and most medically appropriate device to allow him to continue to stand and to get the most medical benefits from standing.

Equipment Trial

EasyStand Evolv Glider: D.L. used this unit on numerous trial occasions with excellent results.  Video can be provided if necessary.  His mother was able to set up the system and complete transfer and positioning help as needed.

Recommended Equipment: D.L. is currently at the shortest height range for the recommended stander once the conversion is made so he has maximal growth capability with this stander and it will last him a longer amount of time.

Standing challenges the cardiovascular system by requiring the heart to pump the blood flow against gravity in an upright position. The EasyStand Evolv Glider also provides and upper body strengthening that D.L. is able to complete while he is standing further conditioning the cardiovascular system.  The increase in cardiovascular function further decreases skin breakdown risk due to increased oxygenation to the tissues.

As discussed above, D.L. is at high risk for long term osteoporosis due to lack of weight bearing and muscle stress on long bones. The increase in calcium can contribute to renal stones, which can lead to significant debilitation and increased cost of care.  Normalizing weight bearing and stress on the long bones as provided by the Glider may assist in reducing these medical complications.

After a full examination by the rehabilitation team and D.L.’s family, the following equipment is deemed medically necessary:

1. EasyStand Evolv Youth Glider that comes standard with includes chest pad, glide handles, adjustable resistance cylinders, flip-up kneepads, and adjustable footplates.

Additional Glider options necessary to maximize D.L.’s function:

1.       Quad Grip Handle Extension: Given D.L.’s decreased ability to grip the actuator to raise or lower himself, this grip extension is necessary so that he can hold onto the actuator.  Without this, he will not be able to hold the actuator and he will be completely dependent to raise or lower the system.

2.       Secure Foot Straps: With D.L.’s spasticity, it is difficult to keep his feet positioned properly.  The foot straps will assure that his feet stay on the footplates so that he gets the necessary benefits of standing.  With the glider feature, it is especially important that his feet remain properly positioned to prevent injury from falling out of the system.

3.       Hip Supports-Medium: With D.L.’s decreased trunk control, he needs lateral hip support to maintain upright standing in the stander.  These will work with the lateral supports to properly position him and allow him to remain in the stander for extended times.

4.       Glide Handle Extensions: Given D.L.’s height and size, he requires the extension so he can reach the handles to use the glider function on the stander.  Without these, he will not be able to use the dynamic feature of the stander.

5.       Contoured Back 19”: This is the contoured back support is similar to the contoured back on his wheelchair.  It is needed to provide him with the necessary postural support.  Without this option, he will have no support behind his back, which will make using the stander unsafe and impossible for him.

6.       Velcro Positioning Belt: This basic positioning belt will keep him properly positioned in the stander.  This is an important safety device.  Without it, he will be at increased risk of falling out of the stander.

7.       Lateral Supports 9”-15” W: With D.L.’s decreased trunk control, he needs lateral trunk support to maintain upright standing in the stander.  These will work with the hip supports to properly position him and allow him to remain in the stander for extended times.  With the glider, he especially needs the trunk supports to prevent him from falling out as he moves his upper extremities.

Thank you for your assistance in maximizing D.L.’s function.

Sincerely,

_____________PT______                                                               ______________Physician__

(List References – See PDF for more details)

A special thank you again, to Lauren Rosen, PT, MPT, MSMS, ATP/SMS for sharing this successful letter of medical necessity with us.

Thank you so much for allowing me a two week trial for the EasyStand Evolv. The purchase of the adult model has brought me great physical comfort and emotional improvement. I suffer from Multiple Sclerosis and am dealing with severe spasticity and neuropathic pain on a daily basis.

After suffering a debilitating attack in 2008 I could no longer walk, stand nor transfer without the support of a turning disc. I became physically incapacitated and emotionally distraught. For years I was basically bedridden and wheelchair bound until I discovered the EasyStand Evolv.

I use the product 6 times a week and stand passively for between 1 to 2 1/2 hours daily. Being in the upright position has improved my body’s range of motion. After I use the stander my hips move more easily and my ankles which constantly turn outward no longer do so. The spasticity in my legs has been reduced considerably and when I return to my wheelchair they no longer twitch nor pulsate uncontrollably. This leg relaxation may last for the entire day. By maintaining an upright position, my breathing and my bowel and bladder function have improved. Also, I hope to prevent deterioration of my bone density leading to osteoporosis, as I am aware of how standing aids this possibility. As of yet, I have not had bed sores, but am well aware of how changing positions can prevent this. Overall, from a physical perspective, this device has facilitated a natural standing posture and reduced both my MS pain and pain caused by sitting or lying in a prolonged or inappropriate position.

Emotionally, this journey has been a difficult one for both me and my family. Although I belong to a support group and have very understanding and compassionate doctors, I often remain in a saddened state of mind. When using the stand, it helps me regain some of my independent feelings and sense of humor. I am often more alert and cognitively aware and focused when reading and doing crossword puzzles. As humans we are meant to stand and when I do so, my family notices I am less depressed and more involved socially and intellectually.

It took me quite a while to find this product as I surfed the internet on a regular basis for something that would be appropriate for my needs. Although my doctors, occupational therapists and rehab coordinators are very knowledgeable and competent, none recommended the EasyStand Evolv.  Frustrated, after spending about 20 hours on the internet and telephone, I contacted Invacare directly and was finally helped. If I was not a persevering and tenacious person, I would have given up, feeling I had exhausted all avenues.

Certainly, there are many others who would like the stander but are unaware of its existence. In my opinion, it would be prudent for all those in the medical profession and rehabilitation facilities to recommend this product to the appropriate people. Posting pamphlets, pictures and contacts would further promote knowledge.

In conclusion, I am thrilled to have the EasyStand Evolv. I believe the standing frame will prevent any physical secondary complications that could result from my prolonged inactivity. My psychological and emotional aura has also improved. By being in the upright position, I feel more positive and more in control of myself. My self-esteem has improved to the point that I want to pursue in a limited way some of the activities I was involved in when able bodied. Hope has once again entered my life. Thank you.

Best regards,

Randi Daniels
Canada

Have you had similar experiences as Randi? Are you able to find the rehab equipment you need thru talking to your doctors or therapists, or do you have to do your own research online?

Photo Credit:  Kirstea

I am a physical therapist working with a 14-year old young lady who is now trying the EasyStand Bantam after experiencing much discomfort in her prone stander.  She stands 3 times per day after each meal.  She was at the point where she could tolerate standing in her prone stander for no more than 2 to 10 minutes at a time and she would end up crying.  Since she has been using the EasyStand, she is able to stand for an hour and 45 minutes per day with no problems whatsoever, and the change in her quality of life is truly remarkable!

1. She no longer cries in the stander
2. She has required no pain medication since she started using the EasyStand
3. Her sleep has improved
4. Her ability to swallow has improved
5. Her lungs are clear
6. Her oral secretions have decreased
7. She is generally much happier
8. She can stand for much longer periods of time

We are all so happy for the positive changes that have taken place for her since she has been using your wonderful stander.  Thank you!

Karen Legnini, PT
www.rackercenters.org

Thank you Karen for sharing your positive experiences with us. This is the type of feedback that makes all of us at Altimate Medical Inc. proud because we are making a difference!

Have you had similar experiences as Karen? What equipment have you found that has made a difference to you or a child with a disability?

Jeff told his DME (Durable Medical Equipment)/CRT (Complex Rehab Technology) supplier,  “That’s crap! I will not accept a denial from my insurance company for the stander. I’ve got to have the stander at home to keep my leg range of motion. What can I do to fight their decision?”

What is self advocacy?

Self advocacy can be described as people with disabilities speaking up for themselves.

Even though a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed.

As medical care becomes more complex, along with shrinking healthcare dollars and problems with payer coverage, patients have had to become stronger self-advocates for their own care and for the insurance coverage due them. Every time a person speaks for themselves to resolve a problem, they are practicing self advocacy. At the doctor’s office, or before a medical procedure, the patient must read and sign a consent form stating that they understand the reason for the procedure or visit. If there are questions about the procedure or visit, it is the patient’s responsibility to ask questions and get answers before moving forward. This action of “asking questions” and “understanding the answers” is the act of self advocacy.

Self-advocacy can also include any verbal or written action which describes a problem that the individual is having. This action is then intended to create interest and action by another person to assist the person in resolving the specific problem. Thus, a person might be self-advocating to an individual (such as an OT or PT), or to a company or organized body (such as an insurance company or a State/Federal agency.)

How does self advocacy help Jeff get his stander?

The simple act of Jeff telling this CRT supplier that a denial is not acceptable is self advocacy. Jeff is creating interest and hopefully action on the part of his CRT Supplier.

Assuming the stander documentation is medically appropriate and complete, the next action by the supplier should be, “Have you considered an appeal?” Now it is Jeff’s responsibility to read and understand what the appeal process is for his insurance. If the supplier sees that Jeff is having a difficult time understanding how to proceed with the appeal process, or has questions on how he can fight against his large insurance company or public payer, the supplier should refer Jeff to the local PAAT (Protection Advocacy for Assistive Technology) group.

PAAT (Protection Advocacy for Assistive Technology) attorneys and advocates are a free resource available to assist people with disabilities and their families as they seek funding for Assistive Technology (AT). PAAT locations throughout the US offer support, resources and guidance through the appeals process. Click here for a link to your state PAAT directory.

As a consumer, are you self advocating, or expecting that someone else will take care of you? As a CRT Supplier, do you know about the PAAT resource to help your customers self advocate?

Why?

If your school needs a stander, gait trainer, wedge, or any piece of assistive technology, you can get someone local to help you with all the details.  You do not have to guess by ordering thru the nearest or biggest catalog on your purchasing agent’s desk.

In almost every location throughout the US, we have numerous medical equipment suppliers and local reps.  They have expertise and samples.  Here are some of the advantages of ordering through a local supplier:

The best way to see how assistive technology will work for your staff and your kids is to try it, by getting an in-service thru a local supplier.

• In-Service: Get an in-service at your school, where all staff can see, touch, and learn what the stander or other assistive technology is all about.  Try some of your students in it.  Invite parents, teachers, the principal, anyone who has an interest in the child’s well-being to be part of it. Check out this video, Standing in an Academic Setting,  to understand why it is good to get school staff involved early.

• Expertise: A local rehab equipment supplier will help you determine what stander and options are appropriate for a particular child, or how to order the stander so that it works well in a school setting with multiple kids. Many of our suppliers are certified by RESNA and/or NRRTS.

• Assembly: Usually a local supplier will deliver the stander to your school fully assembled.  This is where the janitors cheer, since often they are the ones who have to put together products that come to the school un-assembled from a non-local supplier or catalog company.

• Fitting: Fitting the child properly in the standing frame is important, and your local supplier can help you understand how to fit it to the child’s needs, and how to make adjustments and the child grows or their needs change.

When requesting bids for a standing frame such as EasyStand, recommend to you school’s purchasing agent include this statement as part of all bids before they buy, “Product must be assembled, delivered, and fitted.” This will take the bids that do not provide the service that your school requires out of the running.

“Product must be assembled, delivered, and fitted.”

Also,  stimulus funds may still be available to purchase assistive technology for your school. If there are funds left in your area, they are scheduled to expire 9/30/11.

To find a rep or supplier near you, visit the EasyStand Supplier locator.

Do you work with a local rep or supplier to get assistive technology for your school? What have your experiences been?

What is Complex Rehab Technology (CRT)?
Complex power wheelchairs, highly configurable manual wheelchairs, adaptive seating and positioning systems and other specialized equipment (such as standing frames and gait trainers) are considered “Complex Rehab Technology” or CRT.

What can I do to help change the access issues that are ever expanding?
You can get involved. Yeah, I know, your very busy, there are only 24 hours in a day, you already do so much for your job, or as a consumer you can barely finish your daily living tasks, etc. If you and I don’t get involved who will? Where will this access spiral end?

How do I get involved?

• Stay informed, go to NCART (The National Coalition for Assistive and Rehab Technology) website
• Contact your local Senator and Representative’s office and help the staff understand the issues and the fix.
• Attend local seminars and conferences and spread the word about the need for a separate benefit category for CRT.
• Attending a national meeting like CELA

What is CELA?
One of the ways that I get involved is by attending the CELA (Continuing Education and Legislative Advocacy) 2011 Conference in Washington DC. The education part of the conference was great, but my reason for attending was to be involved in a fix for the access issues we continue to face everyday.

Here is a brief look at CELA 2011:

Part of the Minnesota CELA delegation (Laurie, Marsha, and Pat) waiting outside Senator Klobuchar's office.

Wednesday February 16^th
Attendees assembled by state. We heard a key note speaker discuss CRT in Health Care Reform; next we had an update on Users First Alliance. Finally on to the Capitol Hill orientation and state delegations’ meeting. Half of the Minnesota delegation had been to CELA and the Hill before, the other half were new to this experience. We discussed our plan for the next day, the role each of us would play in the brief time we had with each congressional staff.

Thursday, February, 17^th
This was was our day on the Hill.  Each attendee (Supplier, Clinician, Manufacturer, and most importantly, the Consumer) went to visit our member of congress or their staff. It was our day to explain the need for a separate benefit category for complex rehabs technology (CRT).

We discussed what CRT is (see definition above).  We described the people with complex disabilities such as Cerebral Palsy, Muscular Dystrophy, Multiple Sclerosis, Spinal Cord Injury, etc. who use CRT. We also explained that these products are not the kind you see advertised on TV, but instead are the type of products similar to that used by the late Christopher Reeve.

Next we explained the entire Team process involved in the assessment and provision for CRT. From the team of clinicians involved in assessment and documentation, to the CRT supplier staff that is trained and credentialed and how the process is labor intensive with high operating costs and many more steps than standard DME.

Our final request was for Congressional support or sponsorship of legislation to create a Separate Benefit Category for CRT, similar to the one that exists for O & P (Orthotics and Prosthetics) under the Medicare DME benefit. We explained that this category must be established so that access to this critical technology can be assured. The basic Medicare durable medical equipment (DME) benefit does not meet the complex needs of individuals who require assistive rehab technology.

After five meetings with Senate and Representative legislative staff, we were tired, yet fueled from being involved in a solution to continued CRT  access.

If you are reading this blog you are in some way part of CRT, either as consumer, clinician, supplier or manufacturer. Please do more, be involved in a solution to access. Can you think of other ways to be involved?

A special thank you to all who work so hard to put together CELA 2011 and more importantly the CRT~ Separate Benefit Category Proposal.

Beside the discussion on the research based benefits of standing, the participants at the workshop will have a hands-on experience with the products. They will be adjusting the standers to best fit their clients (workshop volunteers) and assessing the various options to understand how they benefit the clients they work with. The training will help the people in the workshop perform a first time standing assessment, give them information and ammunition to work with the funding agencies for the purchase of a stander, and the importance of the final fitting in the client’s home or school. The object of this workshop is to have all participants comfortable to fit, fund and feel successful at the final delivery of a standing device.

I hope to see you at the International Seating Symposium, or another one of the other standing seminars across the US that we are doing.

School and clinic therapists have different roles and perspectives. Communication is important to ensure a shared overall vision and make sure that all the child’s needs are being met. We can never make assumptions about what a therapist in a different setting may or may not be addressing with a child.

One school-based Physical Therapist stated that durable medical equipment for home use should be trialed and justified by a clinic therapist because the school therapist’s only obligation is for equipment that is used at school. Open therapist communication in such an instance is essential, because the clinical therapist generally has access to the child for a matter of hours in a very controlled setting. A therapist seeing the child at school or in the home may have a better idea of how variables such as environmental factors, fatigue, or caregiver support will affect equipment needs and utilization. My belief is that the professional with the best access to child and family, equipment, the environment in which the equipment will be used, and outside supports such as social work, is the professional to best help address the need. I would love to hear how others approach this issue.

Communication between therapists leads to better outcomes for the child.

The clinic therapists noted that parents frequently do not remember school therapists’ names or professional roles. Some may not understand school therapist involvement or be able to tell a clinic therapist accurately whether or how much a student is receiving service. One great strategy utilized by the clinic is a 3-ring binder with space for reports, home exercise programs and educational materials, and business cards. When the binder travels with the family to outpatient therapies, medical appointments, and school meetings, it helps ensure that the different entities are on the same page and helps the family easily organize information that my otherwise be overwhelming.

School therapists may follow children for years at a time, while clinical therapists see them for episodes of care. The clinic therapist may give the school therapist suggestions for functional activities to weave into the school routine at the conclusion of an episode of care. The school therapist may then alert the clinic therapist of gains made during a therapy break to determine an appropriate time to resume outpatient therapy.

“One great strategy utilized by the clinic is a 3-ring binder with space for reports, home exercise programs and educational materials, and business cards.”

Remember that before child-specific inter-agency communication can begin, a parent must agree to the exchange of health information by signing an information release or HIPAA form as appropriate. It may be easiest to have the form be a standard part of the paperwork associated with a clinic evaluation or a school IEP meeting. If a guardian does not agree to the release of information, he or she may still be willing to provide copies of school assessments and Individualized Education Plans to the clinic and copies of clinic evaluations and progress notes to the school.

It sometimes feels that making contact with another therapist takes time that is already scarce. In the long run, you will know it is worth it if you can avoid:

• Hearing a family tell you they do not use the wheelchair because it is too heavy
• Seeing a stander collecting dust
• Trying to figure out why a middle schooler does not have desk length armrests
• Puzzling over why that joystick does not swing away
• Banging your head against a wall, wondering, “What were they thinking?!?”

Reach out and make contact to find out what your colleagues are thinking. Your students and patients are worth it.

Therapists, how do you determine roles between the school and clinic? Parents, how do you help ensure that your child’s medical professionals are communicating?

There are local support groups and chapters for people that have a common disease or disability that need volunteers and would welcome your help. If you are a medical equipment supplier, this is a great way to profile your company as a leader in the community and to meet potential customers face-to-face, as well as healthcare professionals that are also working with these organizations. For example there are often adaptive sports groups that have basketball, rugby, and tennis tournaments on a regular basis, or individual events, like water sports, once a year. Often these programs are linked to local rehab hospitals where many of the therapists volunteer, who you will be interacting with. Also, there are consumer support and advocacy organizations, like the National Spinal Cord Injury Association, the Christopher and Dana Reeve Foundation, Muscular Dystrophy Association, United Cerebral Palsy, and many others. Often they have local support groups for the individuals and their families, and these groups would welcome a supplier or therapist to talk about adaptive or medical products, and insurance funding at their meetings.

Before you commit to a group you should research what the goals of the organization are, how active they are, and how they are structured. Then determine if you, and/or your company, will fit the expectations and mutually benefit from this involvement. Some are mostly focused on research and others are focused on support and community integration. Other groups are active in public policy and can be a strong ally if you need help with state regulations or reimbursement issues. Some are only local, and some are linked to the national organizations that have people that can help influence national policies.

Working in the Complex Rehab industry, often durable medical equipment suppliers and medical professionals are helping people everyday, but more can be done within your local disability community. There are many organizations that would appreciate your support and involvement.  But if you commit to help, remember what President Kennedy said, “Ask not what the organization can do for me, but what I can do for the organization.”  The people you are supporting will support you if you are sincere about helping them.

How have you gotten involved with disability organizations as a consumer, medical professional, or medical equipment supplier?

Photo Credit:  The U.S. Army

Here are my picks for EasyStand’s Top Blog posts of 2010 (in order of publication date):

Chris Reeve Talks about his wheelchair on Sesame Street (Video) by Jackie Kaufenberg
Holiday baking for Special Needs, by Mary Miles, PT
Guaranteed Winter Fun: Accessible Sledding by Tiff Carlson
Taking a Stroll thru Virtual Reality by Shawn Dean
Brace Yourselves! The Role of Orthotics in Standing Programs by Stephenie Labandz, PT
Free Capable Kids Coloring Book by Bryanne Freitag
Looking in the Mirror by Heather Whitener
Memories of Rehab Past by Tiff Carlson
The Enigma of Competitive Bidding by Patrick Boardman
Good Help is Hard to Find by Shawn Dean
Crusader for the Non Bi-Pedal, on a Wheeled Horse I Ride by Doug T Neidermeyer
22 Ways to Pay for a Stander by Nancy Perlich, COTA/ATP
Making Hotel Bathrooms Safe for Transfers by Mark Schmitt
Insight into Job Searching with a Disability by Shawn Dean
Superhero Play for Kids of All Disabilities by Jackie Kaufenberg
Why Pageants are Good for the Disability Community by Tiff Carlson
How to Sell Used Medical Equipment by Bryanne Freitag
Standing Therapy for Milder Motor Delays by Stephenie Labandz, PT
A Peek Behind the Curtain of Being an Uncle with SCI by Shawn Dean
Adapted Yoga Continues to Improve by Abilities by Tiff Carlson
Ipad Apps for Kids with Special Needs by Jackie Kaufenberg
What Drives People to Stand? (Beyond Medical Reasons) by Andrew Gardeen
Stand Up to Expand your Mind by Andy Hicks, ATP
Conventional School or Home School for your Special Needs Child by George Passwater
The Importance of having someone who truly understands you by Tiff Carlson
Lessons from my Epic Battle with Pneumonia by Tiff Carlson
Survive a Minnesota Winter from your Wheelchair by Tiff Carlson

Are you interested in writing for the EasyStand Blog in 2011? We are always looking for new points of view!  Contact jackie@easystand.com for more information!

What are your goals for 2011? Will you be spending more time with your family? Staying healthy thru a better diet, exercise, or standing program? Tiff’s new year resolution is to stop being a worry-wart. What’s yours?

Happy & Healthy New Year from everyone at Altimate Medical!

Photo Credit: faith goble

Are we stifling or limiting proprioception feedback with wheelchair seating and positioning, as we focus on containment? Much of the seating components (chest harness, three point pelvic belts, hip guides) are designed to hold a part of the child in place, from head to toe. Most clinicians and suppliers understand that there is a time for positioning, but there also has to be a time for movement. Using less whenever possible to allow for the child’s voluntary movement can provide them with more opportunities to move and explore.

The EasyStand Bantam helps Lily easily change positions throughtout the school day.

When a child stands or walks periodically throughout the day, they can often feel more freedom of movement and a greater sensory experience. Standing can allow them to feel the pressure on their feet, the weight shift in their legs, the movement in their hips and the balance of their trunk and head working with gravity. Voluntary movement through changing positions provides their body with improved kinesthetic and proprioception awareness. Realistically many of these children may be weak in the beginning of a standing program and will need support and positioning components. But when given the opportunity to stand for longer periods, frequently throughout the day, they will gain strength, need less support, and reap the benefits of more voluntary movement.