By Matt Lalande in Spinal Cord Injuries on June 18, 2021
By: Matt Lalande and Jean-Charles Langlois (CLCP – Certified Life Care Planner)
As a spinal cord injury victim, your inpatient rehabilitation is no doubt a time of major adjustments and transition in terms of your emotions, body, and lifestyle. Part of what you will do, or have begun to do, during your rehabilitation stay is to make plans to go home. Getting ready to go home may seem like something you would do at the end of your hospital stay, but the earlier you begin to plan for your transition home, the more smoothly your return to home will be.
As difficult as it may be for you to focus on your departure from the hospital or rehabilitation centre, your social worker and Occupational Therapists will need to discuss your living situation with you much before your discharge home. There will be many questions to consider, such as – where you will live when you leave the hospital? Is your home wheelchair-accessible? How many steps are there to enter your home? How much assistance do you need to complete daily activities and tasks like dressing, bathing, making meals, getting in and out of bed, and using the bathroom?
Remember – once a spinal cord injury victim returns home and is no longer within the “safe walls” of the rehab unit, the real adjustment to spinal cord injury begins – and it’s important to plan ahead as much as possible.
While the return home is usually eagerly anticipated through most of your hospitalization, as the date nears a lot of people with spinal cord injuries begin almost to dread it: Discharge means facing all the unknowns awaiting them in the “real world.”
In this article, Matt Lalande, Hamilton Spinal Cord Injury Lawyer and Jean-Charles Langloid, an Occupational Therapist and Certified Life Care Planner, write extensively about the challenges of going home after a spinal cord injury and how to better prepare for the reintegration into your family and community life.
Spinal cord inpatient rehabilitation likely lasts several weeks, if not months, but your rehabilitation should continue well beyond the time you leave the hospital. Your discharge from the hospital can be thought of as a transition to another level of care or rehabilitation.
At home, you may receive health care services, such as nursing care, physical therapy, occupational therapy, speech therapy, or social work services. In an outpatient rehabilitation setting, you may receive individual therapies, participate in a day treatment program, or receive physician care. You and your rehabilitation team, including your occupational therapists, will plan for follow-up care based on your individual needs, while your Hamilton spinal cord injury lawyers will ensure that proper insurance funding and accident benefits are put into place so that you have nothing to worry about financially.
People with spinal cord injuries need different levels of follow-up care after discharge from inpatient rehabilitation. It is very important to follow up with your family doctor within two to three weeks after being discharged from the rehabilitation hospital for ongoing medication management and to continue to address your medical care.
To help your family doctor manage your care effectively, it is important for you to have a copy of your discharge summary and a summary of significant medical procedures that were performed during your stay (such as X-rays and MRIs). In Ontario, hospitals and facilities will forward the discharge information directly to your family doctor.
Your GP, who will more likely than not rely on your SCI specialist, can prescribe or renew prescriptions and provide ongoing treatment as needed.
It’s also important to keep seeing your spinal cord injury specialists and other specialists as required. For example, many persons with spinal cord injuries will need to see a urologist regularly to manage bladder issues. Also, if you had surgery, the surgeon (most likely a neurosurgeon), will need to monitor your healing progress and make any further recommendations post-rehabilitation. Your family doctor can also refer you to other specialists as needed.
After discharge from rehabilitation, spinal cord injury victims often return to their homes or a family member’s home. Many people continue to receive nursing care and therapy at home. Home health care providers and PSW’s are trained to teach skills and provide ongoing treatment. They may recommend changes and adaptations to improve your level of independence and safety and to conserve your energy. The types and amount of home health services provided will be likely paid for by your auto insurance carrier pursuant to the Ontario Statutory Accident Benefits Schedule which your Hamilton Spinal Cord Injury lawyer will assist to arrange.
Home health services may include nursing care, physical therapy, social work services, occupational therapy and case management services. Home services would also include speech therapy, bowel and bladder management, wound care, PEG (feeding) tube care, provision of intravenous medication, monitoring of vital signs, and more. Usually, the home nursing staff’s goal is to teach the caregiver(s) to provide the care and then to follow up two or three times a week to answer questions and respond to concerns.
Therapy in the home provides an opportunity for a spinal cord injury victim to put the skills he or she learned during their inpatient hospital stay to practical use. As therapists work with you at home, they may modify or adapt the skills they teach based on your needs and home environment. Services are typically provided two or three times a week for a short duration of time, with the expectation that you will transition to an outpatient setting for continued therapy services.
Outpatient rehabilitation services may be prescribed if you need ongoing or periodic medical care and therapy. Depending on your needs and community resources, outpatient services can be received from different sources, including the rehabilitation hospital, hospital outpatient clinics and centers, private therapy services, and physicians’ practices. Spinal cord injury victims who receive outpatient services typically receive therapy two or three times a week with the expectation that they will continue to practice the skills and exercises at home.
The duration of outpatient therapy varies, depending on your level of participation and functional goals.
Outpatient services may include, but are not limited to: medical care, physical therapy, occupational therapy, speech therapy, hand therapy, aquatic therapy, vocational rehabilitation, social work, psychology services, orthotics and prosthetics services, seating and mobility, fertility, wound care, and other clinics.
Depending on your needs, you might receive only one of these services, or you might receive a menu of services as your rehabilitation progresses.
Many people with spinal cord injuries need extra help with daily activities after they go home. Often, family members provide the required assistance, which may include assistance with activities of daily living (bathing, dressing, using the toilet, grooming, and eating), getting into and out of bed, preparing meals, and using transportation.
Some people are most comfortable with assistance from family members or friends. Others choose to hire PSW’s or a combination of family, friends, and paid help.
Dr. Andrin Seguin, in his book entitled “Spinal Cord Injuries: How Families Adapt” tells us that when making decisions about who will be your primary caregiver(s), you will need to think about who in your family is willing to assist, the time needed from the caregiver, and who is physically able to perform the more labor-intensive activities (such as transfers). You will also need to think about where you will get additional support if needed.
If you are thinking about having your spouse or another family member as your primary caregiver, consider how care giving may change your relationship with him or her. For example, intimate interactions with your spouse or partner may become less frequent or limited due to managing your daily care needs. Your family member also may be afraid or anxious about the physical or emotional changes stemming from your Spinal Cord Injury.
In addition, although the insurance company (assuming you were injured in a motor vehicle accident) will pay attendant care benefits of up to $6000.00 a month to someone misses work to care for you, your family finances will no doubt change, which could add stress or anxiety at home. Together, you may need to answer questions such as: Which family member(s) are working and can they return to work? How will bills be paid? What financial obligations do both individuals have and how will they be met? Will they be losing income to care for you? Will there be an incurred expense? Remember your caregiver’s roles are often very demanding, both physically and emotionally. It’s important to understand that the stresses felt from the caregiver’s point of view will be different from the stresses the individual with the spinal cord injury may experience.
Caregivers may feel overwhelmed or guilty about having to say “no” to you. They may feel resentful about not having time for themselves and their own activities. In contrast, you may be concerned with the physical aspects of your SCI, such as walking, bowel and bladder care, change in or lack of sexual function, and frustration when doing simple tasks.
Both you and your caregiver will most likely worry about continuing health care, time constraints, financial means, and changes in your work or household roles. Keep in mind that your caregiver’s needs and concerns are as important as yours. He or she must find a balance between their needs and your needs. To alleviate burnout, resentment, and anger, make sure that you communicate openly and seek additional assistance if needed. To ensure a successful relationship, you and your caregiver should try to maintain a healthy, balanced lifestyle by eating three meals a day, exercising, getting plenty of rest, and finding times to pursue enjoyable activities either together or apart.
Good time management and organization are also essential to maintaining this balance. For instance, getting your finances in order will reduce stress that might jeopardize your relationship with your caregiver. Getting a little extra assistance from other friends, family members, and caregivers can also help you and your caregiver maintain a positive outlook.
Keep a list of tasks and chores you need help with, and pull it out when others ask what they can do to help. Shopping, making a meal, and doing afternoon child care once a week are good examples of how others can help alleviate some of the overall care. Finally, finding friends and support in the community is essential to alleviate the stresses of being a caregiver. Caregivers who seek out friends to talk with or join support groups (see below) have a better chance of adjusting to their loved ones’ SCI and their new roles.
Most often, family members serve as primary caregivers for persons with SCI. In some instances, family members acting as caregivers may need to hire additional help. For example, a family member may be able to help with bathing and dressing but unable to help the person with transfers from the bed to the wheelchair, bedside commode toilet, etc. In such cases, a PSW could be hired to take care of the daily routine needs of a person with a disability.
Hiring a PSW can: keep the roles of the caregiver and family members separate, enable the person with a spinal cord injury to live more independently, give other family members or caregivers the opportunity to return to work or to take care of other obligations. If you’ve been hurt in a motor vehicle accident, your insurance provides for attendant care up to $6,000 per month up to $1 million for life.
We would recommend that before your discharge from the rehabilitation hospital, you will want to figure out how you will get home. Your rehabilitation team can help you decide the best way to get home based on your medical needs and the distance you will need to travel. Your occupational therapists, your social worker and/or discharge planner can assist you with coordinating transportation home. Your rehabilitation team can help you determine if you can ride in a vehicle in the seated and upright position or if you need to lie down on a stretcher. If you can ride in a vehicle in the seated position, you will need to know what kind of wheelchair (manual or power) you will use the day you are discharged from the hospital.
If you are unable to walk following your injury, a wheelchair can help you get where you need to go. The type of wheelchair ordered for you will depend on:
Your physical therapist, occupational therapist, case manager, equipment specialist, physician, and rehabilitation engineer may all be part of the “seating and mobility team” that helps you decide on the chair that best meets your needs. Before ordering a wheelchair, your physical or occupational therapist will measure you and choose a wheelchair size based on the measurements.
There are three types of wheelchairs:
Manual Wheelchairs – come in different sizes, shapes, and weights. Most manual wheelchairs have a variety of features to choose from, such as different styles of armrests and footrests. When selecting and ordering a manual wheelchair, you and your seating and mobility team will want to consider three goals: ability to propel the chair well, adequate adjustability of the wheelchair, and comfort in the wheelchair.
The first goal is to choose a wheelchair you can propel (move) well. If you will propel it using your arms, you will want to choose the lightest-weight wheelchair possible. If you will use your arms and legs to propel it, you will want a lightweight chair that allows you to touch the ground with your feet. The second goal is to get a wheelchair that is highly adjustable. As your functional status changes, you will want the wheelchair to be able to change as well.
The third goal is to get a chair that is comfortable. There are two different types of wheelchair frames: rigid and folding. The type you choose should depend on which chair is most comfortable for you. The chair should be easy for you or your family to get in and out of a car or van. Your physical or occupational therapist will talk with you about the pros and cons of both types of frames and will help you decide.
Power Wheelchairs – if you have suffered a complete spinal cord injury and do not regain full use of your hands or arms after your injury, your rehabilitation team may suggest that you use a power wheelchair. A power wheelchair enables you to get around many different places quickly and efficiently. Just as there are many different types of manual wheelchairs, there are also many different types of power wheelchairs.
Power wheelchairs fall into three main categories: rear-wheel, mid-wheel, and front-wheel drive. The main difference among these categories is the way in which they drive and steer. During your rehabilitation stay, you should have an opportunity to drive several different chairs to see and feel the differences. Ask your rehabilitation team to explain how the chairs differ and why one might be better for you than another. Power wheelchairs can be operated in a variety of ways. If you are not able to use your hands to drive the chair, you can use your head, chin, or breath to operate it. In recent years, equipment companies have developed many systems to operate power wheelchairs. Most of the driving systems are interchangeable. You may learn to drive using one system, such as a head control, but as you gain greater strength in your arms, you may be able to switch to using your hands to operate a joystick. In the end, you should choose the system that you like and one that is the easiest and most reliable for you.
You should also think about whether you need to have a power-seating system put on your power wheelchair. These power systems include a tilt system, a recline system, and an elevating seat.
Scooters – many people like scooters because scooters are smaller and more streamlined than wheelchairs. In addition to smaller size, scooters have several other advantages, including the ability to be taken apart and put into a car for transport, and often at lower cost. The biggest disadvantage of scooters, however, is their limited amount of options, and they are not very adjustable. They offer few or no options in seat size and drive controller. They can have a significantly larger turning radius than some wheelchairs, and often they cannot accommodate the special adapted seating needs of persons with spinal cord injury.
Other Mobility Aids
Depending on your level of spinal cord injury, you may or may not be able to walk again. However, if it is appropriate, your physical therapist will teach you to walk again and help you select walking mobility aids. These aids, which include walkers, canes, and crutches, can increase your stability and help prevent you from falling as you walk over different surfaces. Your therapist will help you choose the safest and most appropriate device for you.
Walkers – are the most stable type of walking devices for people that suffer incomplete spinal cord injuries. These devices include standard walkers with four legs or rolling walkers with two legs and two legs with wheels. Most walkers can be adjusted according to the height of the user. A folding walker is the easiest to get in and out of a car.
Canes – come in a variety of sizes and shapes. The most stable type of cane is one with a base and four legs at the bottom. Depending on the size of the base, the cane is called a “large-based quad cane” or a “small-based quad cane.” A “straight cane” has a single point that touches the floor. Most canes can be adjusted according to the height of the user.
Crutches – are another alternative. “Axillary crutches” come up underneath your arms. “Lofstrand crutches” have a cuff that goes around your forearm. If you are learning how to walk with long leg braces (KAFOs), you will probably learn to use Lofstrand crutches.
Ramps – Where sufficient space is available and the elevation change is not too great, a ramp is a good, low-maintenance option for making a home accessible for a person with a spinal cord injury. The general rule of thumb for a ramp’s slope is a 1-inch rise for each foot of horizontal run. For example, if there is a two-foot rise from the ground to the entrance, a ramp approximately 24 feet long is needed. In addition, a 5-foot square level turning area should be available at the top and bottom of the ramp.
Porch Lifts – where space is limited or the height is too much for a ramp, a porch lift is a good option for spinal cord injury victims. A porch lift has a gate at the top and bottom, and a platform that travels vertically from the ground to the level of a porch or deck It should be remembered, however, that porch lifts do require some maintenance, and they are more expensive than ramps for heights less than several feet.
Stair Glides – inside the home, a number of options are available for travel between floors. Two options, stairglides and platform lifts, transport you up and down the stairs. To use a stairglide, you must have enough trunk stability to sit on a seat that is mounted on a rail along the stairs. The seat travels up the rail to the next floor. If you are using a wheelchair, you will transfer to the stairglide seat and locate a second wheelchair on the second floor.
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Your home is more than a building. It is your place to live and it reflects your personality, taste, and style. After a spinal cord injury, however, accessibility of your home becomes a top priority. A place that allows you to live as independently as possible can become your home. It is not uncommon for people with spinal cord injuries to need home modifications, such as ramps or wider doorways, to accommodate the use of a wheelchair or other durable medical equipment.
If you are returning to your current home, a friend or family member’s home, or considering other options, you will need to think about the accessibility. Most sub-acute facilities or skilled nursing homes are modified to accommodate someone with a disability who uses a wheelchair. Family or friends are encouraged to visit potential facilities to determine those that will meet your needs. They can talk with staff members and current residents, take a tour, and look around.
Our Hamilton Spinal Cord Injury Lawyers often help our spinal cord injury clients in regard to housing modifications. We often work with the two main accessibility construction companies in Ontario who are well known for their expertise in home modification estimate, planning construction.
We also often work with insurance company adjusters in regards to finding home modification for persons with disabilities and spinal cord injuries. If you were hurt in a motor vehicle accident, the funding authority for home modification is found at S.16(3)(i) of the Accident Benefit Schedule – which tells us that insurance companies shall pay for all reasonable and necessary expenses incurred by a spinal cord injury victim in undertaking activities and measures that are reasonable and necessary for the purpose of reducing or eliminating the effects of any disability resulting from the impairment or to facilitate the person’s reintegration into his or her family, including:
(i) home modifications and home devices, including communications aids, to accommodate the needs of the insured person, or the purchase of a new home if it is more reasonable to purchase a new home to accommodate the needs of the insured person than to renovate his or her existing home;
The cost of purchasing a new home is capped at the cost of renovating the insured person’s existing home by Section 16(4)(c) of the SABS.
Remember, many variables come into play when planning for home modifications.
For example: How will you enter your home? Are there steps? If so, where? How many? Do you need a ramp? If yes, what kind of ramp? Is it portable or permanent? How many exists are available in case of an emergency? How wide are the doors and do they need to be widened? Which rooms do you need to access? Modifications can range in cost and duration of completion. It’s important to prioritize those modifications that need to be done before discharge and those that may be completed at a different time. For example, widening a doorway could be very timely and expensive versus removing the door and adding a curtain for immediate privacy
Normally your spinal cord injury lawyer will work closely with a community treatment team member to submit an “OCF-18-Treatment and Assessment Plan” to the insurer requesting payment of a Home Accessibility Report from a company that specializes in the custom design, renovation, and construction of homes for people with physical challenges or limitations.
If the assessment is approved, the company will go on to assess your existing home and determine what modifications would be required to the existing home in order to make it safe and accessible to the insured. If it is more reasonable to purchase a new home, then the same company will prepare an alternative housing report which will outline the costs associated with the purchase and modification of a new accessible home for the insured.
For spinal cord injury victims, driving after a spinal cord injury can be very liberating. However, after a spinal cord injury, weakness, paralysis, sensation, balance, spasms, and skin integrity can all affect your ability to drive safely. These issues, as well as your strengths, are considered in adapted driver rehabilitation programs, which include training and adapted equipment to assist individuals with disabilities in returning to driving. Adapted driver rehabilitation may be able to assist you in becoming more independent in accessing your community, work, social, and recreation opportunities. This section offers information about the professionals involved in driver rehabilitation, the process of returning to driving, and the technology available to people with spinal cord injuries.
With today’s technology, adaptations can be made to accommodate people with a variety of disabilities, including spinal cord injury. In a 1996 survey, more than 72 percent of people with SCI reported that they were able to return to driving, although most of them said they had had their vehicles modified in some way.
Many devices are available for adapted driving. Your driver rehabilitation specialist (normally retained by your occupational specialist) will be able to assist you in determining the most appropriate equipment. Work with him or her to choose equipment offered by a manufacturer or vendor with a good track record and reputation for safety and quality.
One example of adapted driving equipment is hand controls. Hand controls allow drivers to operate the accelerator and brake with their hands. You will have your own style of hand controls that suits you and will allow the best access to safely operate the controls. If you steer with only one hand, a spinner knob is required. It is often used in conjunction with hand controls and is generally operated with the dominant hand while the hand controls are operated with the non-dominant hand. Other types of knobs or grips are listed below and may be appropriate depending on the amount of function and strength available in your hand. For those who have decreased strength in the shoulder or elbow, there are additional alternatives for steering (included below), such as reduced effort steering. A system that incorporates both steering and acceleration and braking is the Scott Driving system, which allows the driver to control all three functions with a single lever system.
Two other keys to independent mobility are being able to get yourself in and out of your vehicle, and loading and unloading your mobility device (wheelchair or scooter). The level and completeness of your spinal cord injury will affect how you transfer in and out of a vehicle. Some people are able to do “pop-over” or “sliding board” lateral transfers. Others require more extensive assistance. Two power devices are available to assist you with transferring in and out of your vehicle. The first is a passenger seat that rotates and slides forward so you can enter the vehicle from an accessible position. The second is a power lift with a sling that is installed in the front passenger area of the car or minivan. Those needing to transfer into a pickup or sport utility vehicle can also use a power transfer board known as the EZ Rizer. This device lowers to a height level with the wheelchair and then rises to the height of the driver’s seat so a level transfer can be done.
Your ability to load and unload a wheelchair also depends on the level of your injury and how much upper body strength and balance you have. Some people with spinal cord injury are able to fold their wheelchairs and lift them into a car. Those who lack the strength, sitting balance, or mobility to do so may need to use a powered device. If you need a powered device, you may be able to use a switch-controlled, motorized wheelchair loader, which sits on the car roof and lifts the chair in and out of a storage compartment. This option only works with a folding frame wheelchair. For those with pickup trucks with extended cabs, there are several different options to assist you in loading your wheelchair either behind the driver’s seat or in the bed of the pickup.
If you are using a power wheelchair, you may need to have a full-size or minivan modified to enable you to enter by ramp or lift while in your wheelchair or scooter. This option allows you to drive into the van with a wheelchair or scooter. Van modifications can include installing a side-entry or rear-entry lift or ramp, and a raised roof or dropped floor. Keep in mind that such modifications alter the structure of the vehicle and can affect its safety and reliability. Therefore, it is important to choose the right kind of van for modification and to be sure the modification is done correctly.
Spinal cord injury can be devastating to an individual and his or her family because life has changed drastically in an instant. Joining a local Ontario support group can help you “work through” some of the issues you face and will help you and your family understand that you are not alone in confronting the challenges of living with SCI. SCI Ontario is a wonderful support resource for spinal cord injury victims with peer support persons in many different localities. A support group will give you an opportunity to exchange valuable information and experiences about living with SCI, and it can provide companionship, role models, community resources and more. It will also help you gather information about resources in your community and tips on how to simplify and modify your life after SCI.
In other words, becoming part of a support group can answer questions and alleviate some of the anxiety associated with SCI. Your occupational therapist, social worker, psychologist, or other rehabilitation team members can help you identify an SCI support group in your area. If you are unable to identify a support group that specifically focuses on SCI, consider attending another type of support group. For example, there are support groups for people with traumatic injuries, caregivers, people with disabilities in general. In addition to support groups, Internet chat rooms can be a way to exchange and share information about spinal cord injuries, there are so many websites which connect people with spinal cord injury to health updates, medical discoveries, news groups, bulletin boards, discussion groups, message boards, for topics related to SCI and related disabilities.
Your medical rehabilitation doesn’t end when you leave the hospital. Rather, your discharge from the hospital can be thought of as a transition to another level of care that may include primary care, home health care, occupational therapy care, rehabilitation outpatient services, and day treatment. Throughout your rehabilitation stay, no matter if you were at Sunnybrook, the Hamilton Rehabilitation Centre, Toronto Rehab, Champlain Health Centre or the St-Joseph’s Rehabilitation Centre, you will have learned new skills and gained new knowledge that you can use at home and in the community to become as independent and active as possible.
Your family and friends can help you make the transition, but you can also look to your health care providers, support groups, and community-based organizations for additional support. If one type of support doesn’t meet your needs, don’t hesitate to look for other resources locally, nationally, or on the Internet.
Before you leave the rehabilitation hospital, take steps to ensure that your discharge destination is accessible, that your caregivers are identified and trained, and that you have identified a safe mode of transportation. Arrange for needed care. Be sure you have a continued care plan, and that follow-up medical care and therapies are scheduled. It is imperative that you have a primary care physician identified and that you have follow-up appointments scheduled with any specialty doctors. Also, make sure you know which medications and medical supplies you will need. Get a copy of your discharge summary from your discharge planners for a clear understanding of your rehabilitation and the continued care plan.
Again, once a spinal cord injury victim returns home and is no longer within the “safe walls” of the hospital or rehab unit, the real adjustment to spinal cord injury begins. In the hospital, everything revolves around you and your new injury. Most needs are attended tended to; each problem solved; any questions answered. Paralyzed accident victims in this setting are all treated the same-they are part of a group. Yet when a spinal cord injury victim returns home, the reality changes: He or she must now find a way to reintegrate with family, friends, and caregivers. Discharge means facing all the unknowns knowns awaiting them in the “real world.”
It’s important as a spinal cord injury victim, you plan and prepare early and reduce as many issues as possible that you may encounter in order to make sure that you are as equally prepared psychologically as you are physically.
Matt Lalande is a Hamilton Spinal Cord Injury Lawyer who has been assisting spinal cord accident victims locally and province wide wince 2003. He has extensive experience dealing with resolving spinal cord injury issues for accident victims and ensuring that they not only obtain the justice that they deserve – but the compensation that they deserve. Call us with any question that you may have, no matter where you are in Ontario at 1-844-LALANDE or local in the Hamilton to GTA/Niagara by calling 905-333-8888. Alternatively, you can send us an email through our website and we will be happy to get right back to you.