By Douglas Kalbach, PT, DPT
Transition planning is a team effort, and one that should begin as early as possible. There is no debate on that issue. From patient/family training, equipment acquisition, home modification, transportation needs, and home service provision to how to pay for it all, addressing these issues can become an overwhelming task for the rehabilitation professional, and an emotional, financial, and psychological drain on a patient, caregiver, or family. Understanding your place in the process and working with the patient’s and family’s goals in mind will make the difference in them simply surviving, adequately managing, or truly living their lives when they return home.
One of the areas we as rehabilitation specialists must address to improve transitional outcomes is the area of home modification and environmental transition preparation. The home modification process initially is much less about the home than it is about the patient and family. Following is a sequence of strategies that can be used to optimize the success of the transition for all of its stakeholders.
Patient Family Interview
A good home assessment begins with a strong understanding of the patient and that individual’s family. As part of this assessment, consideration should be given to the family members’ lifestyles, daily schedules, and other specific needs while helping them understand the alterations that may be required to their “normal” routine to accommodate their family member’s transition home. A systematic interview will help the patient and family better understand the effect merging their schedules will have on both a daily and long-term basis. Understanding the patient’s scope of care and the availability of additional caregivers is essential to get an accurate representation of transition demands. A discussion of the basic home layout will assist in getting an initial picture of the barriers that may lie ahead. It is at this time that all possibilities should be considered, including the potential for significant physical changes to the home and even the possibility of acquiring a new home. Furthermore, a discussion about existing funding sources should be addressed so that a realistic approach can be facilitated at the outset.
Physical Home Assessment
The physical home assessment is best done in person, but given time or distance limitations, there are options. To gather the necessary information for a home assessment, today’s technology allows a therapist the use of digital photography/video, and even the ability to tour a home live—though remotely—via phone, laptop, or tablet web cam. In these cases, be sure someone is available on-site to provide accurate measurements and descriptions of space and conditions.
The physical assessment is a natural extension of the interview process. The clinician can assess issues identified in the interview as well as other potential challenges and possible solutions. Many clinicians lack the experience to address architectural issues related to load bearing walls, electrical demand, and basic renovation options. In these cases, it may become necessary for the therapist to consult a professional, or ask the family to recommend someone who would donate time to accompany the therapist through the home to form an accurate idea about the practicality of significant changes to the home’s structure.
Identifying barriers is often the easy part. Prioritizing and recommending the best solution for a given barrier, especially more complex issues, is much more difficult. With cost and time restrictions present in so many transition situations, keeping it simple is often the best approach.
You may have learned about Maslow’s “hierarchy of needs” in an introductory psychology course; although it is an outdated theory, a similar concept can be used to guide prioritization here. Basic needs typically take priority over higher level needs. Strive to empower the patient and family to help identify their most pressing concerns, evaluate available resources, and address as many barriers as possible. Aim to get the most benefit out of what resources are available.
• Physiological needs (I will survive today)
Adequate power for ventilator or monitoring equipment
Safe positioning, bed/chair
Mobility, assistive device/wheelchair, DME
Heating/cooling system in home
Creating a home environment where the patient feels confident the care they were receiving in the medical facility will continue is paramount. This level of confidence will depend on the severity of the individual’s disability and amount of caregiver assistance needed. In addition to family/caregiver training, there should be a focus on adapting a home environment that will function to the capacity necessary to provide the level of care required for the individual while maintaining the homelike atmosphere, including home design that will accommodate the use of power mobility. Unfortunately, this is often where basic funding resources stop.
Creating such an environment may require adaptations ranging from adding grab bars, a toilet frame, or a tub bench near transfer areas in the bathroom to widening doorways or more complex renovations of the space, such as a roll-in shower, for specific bathing needs. Changes in electrical supply to support medical equipment in the bedroom as well as creative storage solutions for patient care supplies may be required. Having the patient/caregivers recreate the daily routine within the space allows them to problem solve issues themselves and identify possible solutions.
• Safety (I feel safe in my home)
Access into home, emergency egress from home
Access to all (essential) areas of the home
Elimination of hazards
Ability to communicate with outside world, phone/computer
Home safety/call bell system, med alert
Individuals need to feel in control of their own safety. This begins with access to and egress from the home, and not only one option will do. The assessment should always identify multiple means of egress in case of emergency. This does not mean installing a wheelchair lift at every entrance, but rather having the patient or caregiver identify their options in case of an emergency from any point in the home. Automatic door openers, portable ramps, or a patient emergency sling may be the simplest answer to provide the level of assurance that they can get out of the home in an emergency.
Transferring between surfaces is a situation that has one of the highest potentials for patient and caregiver injury. Assessment of transfer assistance occurs in the medical facility with the prognosis of future need assessed as well. The range of need for transfer aids can vary tremendously from a sliding board, to a mechanical lift and even to an overhead track lift system. If functional progress is expected, there are rental options available for most patient lift aids. Also remember, if an overhead system is recommended, there may need to be structural changes made to the home. Stair lifts also can serve as an avenue to reinforce safety. Whether straight or curved, stair lifts can be modified and installed to fit a range of stairway styles to create a barrier-free environment in a multilevel home. A number of residential elevators on the market can be installed with minimal construction costs, allowing for a safe and dependable means of getting an individual between home levels safely, even with a wheelchair.
Additional hazards need to be identified and eliminated. Elevation and surface changes, obstructing furniture, and protrusions, eg, hooks and shelves from the walls or doors etc, should all be removed or relocated to avoid possible injury.
Access to communication is essential if individuals are going to be at home independently. Phone connection can be provided traditionally, through Bluetooth technology, or through touch screen or simple switch activation with an environmental control system. Augmentative and alternative communication (AAC) is essential for individuals to have a voice in their family and community. Several smartphone/tablet applications have made AAC an affordable and user-friendly reality.
In larger homes, a simple call bell system can be installed to alert caregivers in other rooms. More independent individuals may require a medical alert program that can be utilized for emergency situations. Knowing help is available at any time allows the individual to live at a more confident and comfortable level.
• Belonging (I am able to socialize)
Participation in family gatherings, activities
Access to social areas of home, eg, kitchen, deck, family room
Community access (para-transit)
Social/intimate life experiences
Work access, employment opportunity
Access to community groups
Being in the home, and feeling at home, are very different situations and depend largely on one’s connection to family. Try to identify any barrier that would limit an individual’s participation in family activities. The kitchen is the heart of the home, and after the bedroom and bathroom, it is the next most important room to assess for modifications. Having a seat at the table may be enough for some individuals and may require only increasing the length of the table legs to accommodate a high wheelchair. Conversely, roll under sinks and cook tops, drop down cabinetry, and repositioned appliances may be needed to provide independent access to the entire kitchen for independent meal preparation.
• Esteem/Self-Actualization (I feel valuable and in control)
Independent access to home
Online community access
Technological advances have brought about a new level of independence for individuals with disabilities. Tablet computers activated through touch, simple switch, and even eye gaze can allow an individual to open doors and curtains, answer phones, control almost any electronic device, and communicate through the phone or even online. Personal vehicle modifications, such as a lift designed for mobility devices, can help support family transport or driving independence, and improve patient autonomy.
When it comes to home modification barriers, unless a patient is wealthy or has a settlement from an accidental injury, and apart from the injury itself, funding is the most formidable obstacle they may face. The rehabilitation specialist should be vigilant to identify any possible means of funding assistance for their patient. We know the limitations of Medicaid and Medicare, as they may provide for some basic durable medical equipment (DME) and service needs. Private insurance may have some provisions for assistance as well depending on the patient’s carrier and plan level. But where to go from there when funding is still needed for a ramp, a patient lift, and the remodeling costs for a roll-in shower stall?
This is where a motivated patient or family with basic computer skills can be a wonderful asset. There are many grants, organizations, and funding sources available. Many states have advocacy groups that have compiled lists of these resources in one location. There are groups that provide assistance for individuals with specific injuries or disease processes such as spinal cord injury, stroke, etc. Some local charitable organizations such as the Knights of Columbus or Kiwanis make provisions for annual donations to local individuals who are in need, and some groups will even volunteer to assist with the actual renovations. Some motivated families have run fundraising events to assist with the costs of modifications and rallied their communities to help.
The requirements to qualify for these funds, the application process, and the response time for these resources vary. It is always best to identify the patient’s needs as early as possible to apply for appropriate assistance. Clinicians should be prepared to provide any documentation that supports the request for funding from any of these organizations.
It is always good practice to schedule a follow-up consultation with the patient or family, by phone or in person, 1 week to 2 weeks after transition. This allows the family time to implement the new strategies for a period of time and determine efficacy of strategies. The therapist’s follow-up gives them an opportunity to discuss challenges and brings the stakeholders together to problem solve those concerns. It is often reassuring to the family just to know they are not alone.
Transition planning is a complex process for patients, families, and caregivers. Empowering patients and families allows them to continue reaching for maximal independence even after they have left our care. RM
Douglas Kalbach, PT, DPT, is director of Voorhees Pediatric Rehabilitation Services at Voorhees Pediatric Facility in New Jersey and a graduate of Temple University. Kalbach has 14 years of experience in pediatric subacute, educational, and homebased therapeutic interventions. For more information, contact RehabEditor@allied360.com.