Residential and Workplace Accommodations
and Assistive Technology for Quadriplegics
by the National Institute for Rehabilitation Engineering
Part-1 ACCOMMODATIONS (updated to July 2002)
The National Institute for Rehabilitation Engineering (NIRE) is a non-profit
organization which operated clinics to design, dispense and fit customized
assistive equipment with user training, from 1967 through 1996. Working
with disabled people's own doctors and therapists, these NIRE clinics
assisted hundreds of people having severe and permanent motor impairments.
The NIRE pioneered the development and use of personalized quadriplegic
self-care and mobility aids; appliance controllers; communications aids;
adapted computers and office equipment; power wheelchairs (steered and
controlled with inertial guidance systems or with breath controls, by
people unable to use hand controls); and adapted road vehicles.
Although the NIRE no longer operates these clinics, it is still active
in dispensing "Accommodation" and "Assistive Technology"
information, advice and referrals. PERMISSION is granted for the free
copying and distribution of this © paper provided all copies are
complete and unaltered.
QUADRIPLEGICS are individuals unable to move their arms and legs.
This often results from neck or spinal injuries which damage or sever
the spinal cord. Sometimes, quadriplegia is the result of a neurological
disease such as Multiple Sclerosis or Amyotrophic Lateral Sclerosis (ALS
or Lou Gehrig’s Disease). "Quadriplegia" means to be paralyzed
in all four extremities. Some quadriplegics also have breathing
impairments requiring their use of electrically powered air pumps called
QUADRIPARETICS are similarly disabled except that their four-limb
paralyses are less severe. This term signifies partial use of at least
one limb and/or a hand or some fingers. Our use of the term "QUAD"
designates either a full quadriplegic or a quadriparetic. The full term
is used when needed. A small percentage of people with Cerebral Palsy
are "functional quadriparetics" with stable disabilities that
neither worsen nor improve with time. Some Cerebral Palsied also have
THIS PAPER applies to "Quads" who have partial to total
paralysis of both arms, both hands, both legs, and both feet. (1) Some
Quads can freely move and support their heads; others cannot. (2) Some
Quads can position and move their hands but not use the fingers. These
people can use a tool attached to one or both hands to typewrite or to
press buttons, one at a time. (3) Other Quads cannot use their hands or
arms at all. (4) Some Quads have useful finger dexterity in one or both
ACCOMMODATIONS, ACCESS & ASSISTIVE TECHNOLOGY - Both disability
types, spinal injury or neurological disease, often become permanent after
the first 3 to 6 months of disability, if not arrested, lessened or reversed
in that time. The most effective medical care is that given by experienced
neurologists within hours after an accident or injury. This paper offers
information and recommendations relating only to "Environmental Accommodations,"
"Access" and "Assistive Devices" to functionally help
permanently paralyzed individuals. It does not offer medical advice -
except to urge disabled people to be under the care of qualified physicians.
Environmental Access Accommodations may include wheelchair ramps,
lifts, elevators, bathroom and kitchen modifications, and special workplace
Assistive Devices are non-medical tools which relate to and assist
with mobility, transportation, communication, activities of daily living,
and performance of job related activities. (NOTE: Implanted medical devices,
such as pacers or muscle stimulators, are not considered "Assistive
Technology." They usually fit in the realm of "Bio-Medical Engineering.")
NOTE: This paper is for quads who have adequate to normal speech,
hearing and eyesight. Quads who also have impaired speech,
hearing or eyesight should contact the N.I.R.E. and request papers dealing
with their added disabilities.
For Newly Disabled Individuals, the first major steps take place
in the hospital. The patient may have been taken from the accident site
to a general hospital for treatment or surgery. If so, the patient’s condition
is stabilized and the patient is observed to determine if the paralyses
are lessening, worsening or seemingly stable.
At some point, the patient is transferred to a rehabilitation hospital
or facility where he or she can be given intensive daily physical therapy.
Additionally, occupational therapists will teach the patient to perform
"activities of daily living" or ADL, using special methods,
procedures and tools as needed.
The object of the therapy is to help the patient become as strong, functional,
and self-sufficient as possible so as to be able to resume as normal a
life as possible. Further prognoses should be obtained as to the likelihood
of future lessening or worsening of the functional disabilities. This
is important to know when planning costly residential modifications.
Typically, people with spinal cord injuries stabilize so as to experience
little change over time. It is the same for the Cerebral Palsied. However,
persons with neurological diseases, such as Multiple Sclerosis, may slowly
worsen or may go through cycles of worsening and remission, followed by
Caregiver's Age and Health are very important, especially when
the disabled person is adult size and heavy to lift and transfer. A handicapped
adult who is unmarried and is to live with his elderly mother, would probably
need daily assistance from a hired aide because of the mother’s physical
limitations. In contrast, a young quadriplegic might well be cared for
by a young and healthy spouse without the need for daily help from a paid
Patient's Age is very significant when planning or implementing
rehabilitation of quads or other severely disabled individuals. Fewer
structural renovations are needed in a residence for a disabled child
than for a full grown adult. Also, rehabilitation goals and methods may
differ for disabled people in various age categories:
- Children require decisions whether to be schooled at home,
in a public school, or in a private school for the disabled. Typically,
they need special tools and special training in school - as well as
adapted equipment at home for their homework. With effective guidance
counseling, the permanently handicapped child can choose a profession
or occupation that is appropriate and attainable.
- Young Adults may need to change their occupational goals and
to undertake special education or training for occupations other than
originally planned. A mason, for example, may not be able to perform
construction work as a quad. He might choose to become a construction
office worker - a salesperson or a buyer - in the same field which he
knows so well. Or, he might take training for an entirely new occupation
- such as computer programmer - in either case depending on special
tools and assistive devices.
- Mature Working Adults with established careers often desire
to continue their professional lives and their home lives much as before,
with environmental accommodations and using special adaptive equipment,
methods and tools. People in this situation often can do what they desire
but with many more adaptations and accommodations. EXAMPLE: The world-famous
scientist, Stephen Hawking, has been able to continue his full-time
career for over twenty years after becoming a total quadriplegic, and
totally non-vocal. He still works full time.
- Retired or Retiring Adults sometimes choose to continue in
their previous life styles as best they can, remaining in the old residence
and trying to work part-time at the old profession. This may require
live-in aides or visiting nurses and therapists, which are costly and
time consuming. Other quads use their retirement to advantage by moving
into a suitable "Assisted Living" center, alone or with their
companions, where aides and therapists are always on the premises and
available when needed. These quads can live comfortably and socialize
with little burden to themselves or to their companions as to cooking,
cleaning, shopping, etc. Often, they write, consult, or otherwise occupy
- Elderly People in Poor Health may still need to be in assisted
living or in a nursing home, whether or not they are quads. Also, quads
with severe mental impairments are often better off in facilities staffed
for working with quads - as opposed to those facilities with few quads,
or none, as residents. They need daily physical therapy, occupational
therapy and recreational services so that facility selection is of the
utmost importance for these ill or mentally impaired quads.
STEPS TO FUNCTIONAL REHABILITATION
with Environmental Accommodations and Assistive Technology
ACCEPTANCE of the Disability Prognoses and Its Reality … by the
patient and his family are very important to facilitate discharge planning
and post-discharge rehabilitation services. If the patient or members
of his family refuse to accept a prognosis of permanent quadriplegia -
if they persist in thinking the paralyses will abate - then they may not
work diligently enough to undergo successful functional rehabilitation.
The patient and his family must understand and accept the details of every
way in which the patient will be functionally handicapped and need help.
Knowing the details allows planning to compensate or work around every
functional need. Obscuring the details, to spare the patient’s feelings,
will invariably obstruct, delay or block many of the necessary accommodations.
This is true for patients in all age groups.
EARLY - DISCHARGE Planning … by the staff, the patient and his
family are very important. It is tempting, but risky, to plan too far
ahead before the hospital discharge. We recommend to NOT plan expensive
changes early on. Purchase of a w/c transporter van should be delayed
while temporarily using a paid w/c transport service. Complex and expensive
home renovations should be delayed, also. Purchase of computer systems,
appliance control systems, etc. should be delayed. However, trial fittings,
user training and purchase of a power wheelchair should NOT be delayed
because independent personal mobility is a necessity at the time of discharge.
Permanent Residential Access Accommodations can cost tens of thousands
of dollars and can involve structural changes to a residence that cannot
later be reversed. Most newly disabled quads cannot afford to pay such
costs with their own money. Thus, many months are needed to determine
and verify needs and to create written plans that include medical and
therapist recommendations, contractor’s proposals, and architectural drawings
and approvals. All of these materials must be submitted to governmental
agencies such as those for Medicaid, Vocational Rehabilitation, Medicare,
applicable insurance companies, if any, etc. in a quest for funding for
most or all of the expenses. To gain the required time, it is recommended
that the newly disabled quad be discharged to his previous residence with
temporary but low-cost accommodations.
Temporary Residential Accommodations should be planned and made
with the help of a visit to the patient’s existing residence by the patient’s
Occupational Therapist. These are the minimal accommodations which must
be met in order for the patient to return home from the hospital. Once
at home, the patient and his companion should start making lists of additionally
needed and desired accommodations. Such lists will be invaluable for planning
more permanent accommodations. The patient and companion should live with
the Minimal Temporary Accommodations for at least 3 to 6 months
before committing to major renovation expenses. It takes at least this
long to fully understand the family’s needs and to decide on the best
- Temporary Ramps to facilitate wheelchair entry to and egress
from the first floor of the residence.
- Preparation of a Temporary Bedroom Area on the ground level
floor, if a private home. Or, in a suitable area of an apartment, assuming
the apartment has an elevator or is w/c accessible.
- Rental or Purchase of Special Bathroom Equipment - if the patient
can access and use the existing bathroom. These appliances might include
a bathtub lift or a shower chair, as appropriate; a toilet seat riser
and/or special handles - if useful for w/c to toilet transfers; or a
Hoyer Lift on wheels - if it will fit and be useful in the existing
- Rental or Purchase of Needed Bedroom Equipment - such as Hoyer
Lift for patient transfer; an adjustable bed with mattress and bedsore-prevention
pad (as recommended by the hospital therapists); bedside tables - lamps
- TV set; a commode chair toilet as recommended by the OTR (if the patient
cannot adequately access and use the ground floor bathroom); a space
to park and recharge the power w/c when it is not in use. Note: If
the patient cannot bathe in the existing bathroom, then washcloth bathing
on the bed may be necessary in the bedroom, for which a baby’s bathing
stand might be handy for handling the soapy water. (This would be temporary
until major bathroom accommodations can be made.) Also, one or more
cabinets for easy-access storage of the patient's tools, appliances
- Outside Domestic Help Services to avoid overwhelming the patient's
companion with the many tasks, chores and services that are needed each
day, should be planned and arranged. These might include services, in
the home, by any one or more of the following: a home health care aide
or practical nurse; a visiting nurse (to give catheter care and/or inject
medications); daily to three times per week physical therapy - in the
home or at a PT center; visits to the home by an Occupational Therapist
to assess and train the patient, the spouse and others in ADL procedures,
shortcuts, and use of assistive appliances, etc. (the OTR will also
help plan expanded future accommodations whether in the same residence
or elsewhere.) Paid house cleaning services may also be helpful.
- Some Convenience Appliances Can Be Gotten for the patient as
soon as it is evident that the patient and spouse are managing and will
continue to manage adequately in the temporary accommodations. These
appliances might include a work table or desk compatible with the wheelchair;
a special telephone that can be used by the patient, unaided; and a
personal computer that can be used by the patient, unaided. Procurement
of these devices is discussed in Part-2 of this paper. Being able
to originate and receive telephone calls when alone will greatly help
the quad, as will being able to use the internet, to send and receive
e-mail, and being able to type, print and (electronically) file letters
or papers. Banking can be done through the internet, also, and the financial
records can be kept.
Permanent Residential Accommodations should be planned during
this 3 to 6 month trial period. An unknown variable which differs in every
situation is how the quad and his companion adjust to their new situation.
If there is one quad and one companion, then one must ask: can the companion
stay at home as a fulltime caregiver? Or must the companion work at a
full-time job, thus having to pay an aide to be at home each workday?
Is the companion healthy enough and strong enough to perform the necessary
tasks of shopping, cooking, and housekeeping for two, PLUS all the tasks
of a full-time caregiver? Will the companion continue to enjoy all this
work and responsibility? Or, will he or she become overwhelmed by it all?
The answers to these questions usually become evident during the initial
3 to 6 months after discharge from the hospital.
Basic choices need to be made about the questions just asked. Also, as
to whether the existing residence should be expensively modified - if
it is a private home that is owned by the quad and/or the companion. Or,
whether they should be in a rented apartment which is approved for adapted,
disabled occupancy - or whether they should reside in a “Group Assisted
Living Facility” where most or all needed services are provided. Note:
some such facilities accept disabled people, only - others can accept
and comfortably accommodate both a quadriplegic and the non-disabled spouse,
companion or parent.
TYPICAL ENVIRONMENTAL ACCOMMODATIONS for Quadriplegics … may include
- Ceiling Mounted Lifting Machines with ceiling tracks, for patient
transfers. These affect the structural integrity of the building and
thus require the services of an architect, in addition to those of the
installing contractor. Typically, a track runs between the bedroom and
the bathroom. This accommodation is very costly but far better than
using a Hoyer Lift on wheels. Some quads can operate the lift alone,
unaided. Others require help from aide, spouse, parent or companion.
- Permanent Wheelchair Ramps for front, side or rear door entry
and exit are much safer and longer lasting than temporary ramps. They
cost much less than elevators and, unlike elevators, the ramps work
just as well during power outages.
- Wheelchair Elevators may be needed for a private home, to access
the second and higher floors. These are prohibitively expensive and,
being inoperative during power failures, can be dangerously confining.
We often recommend to not use such elevators to access higher floors
in a private residence. Instead, a two or three room addition can sometimes
be made to an existing house at ground level, to provide accommodating
rooms: bedroom, den and bathroom without need for an elevator and without
an elevator’s costs and hazards. If the lot size permits this, then
this is the recommended course. It also makes the house easier to sell.
- Enlarged Hallways and Rooms may be necessary in some residences.
This is very costly. Adding on one or two rooms and a bath is less costly
and more satisfactory in most instances.
- Special Bathroom Facilities might include either a bathtub
with a special patient lift - or a stall shower with an appropriate
roll-in shower chair. An Occupational Therapist can help determine which
is best and how to design and implement the chosen tub or shower arrangement.
The doorway needs to be wide and the bathroom needs to be large enough
for wheelchair navigation and transfers. The sink needs to be at an
appropriate height and have open legroom underneath with an offset drain
trap (with no cabinet). It also needs to have special handles and a
special spigot for easy use by the quad in his wheelchair. The toilet
needs to be wheelchair accessible and the correct height, and there
needs to be an overhead ceiling lift to facilitate transfers back and
forth between w/c and toilet. The toilet needs to have a spray cleaning
system built-in if the quad cannot handle and use toilet paper. There
will need to be appropriately mounted mirrors and storage cabinets in
the bathroom. There should also be an alarm and intercom system so that
the quad can call for assistance if needed.
- Special Kitchen Accommodations may also be desired, especially
if the quad wants to be able to prepare and serve food and cleanup afterwards.
It is relatively inexpensive to provide, in the kitchen area, a dining
room table that is wheelchair compatible. However, to equip a kitchen
for quadriplegic access to cabinets, refrigerator, stove, oven, microwave
oven, and countertops - requires major work and is very expensive. An
occupational therapist can be very helpful in planning and designing
this type of kitchen, especially when working in cooperation with an
architect and contractors. If a house has only the one kitchen, these
modifications are so extensive and "different" looking as
to greatly reduce the salability of a house after the work has been
completed. However, if the main kitchen is left alone and a small
"quad accessible" kitchenette is included in the add-on room
discussed above, then the house's value is not lowered nearly so much.
(The same can be said of the bathroom alterations.)
- Funding All These Residential Accommodations is a major challenge
for the quad and his companion, spouse or parent. MEDICARE: Enrollees
(65 or older) may have lifts, wheelchairs, respirators and power wheelchairs
paid for on presentation of proof or "Medical Necessity."
There is no income test for these benefits. The equipment vendors should
know how to apply. OTHER FUNDING: Typically, for low-income
people, state Medicaid will meet many of the costs if - and
only if - the costs for facilitating outside, independent living are
to be less than the costs for housing the quad in an assisted living
facility or nursing home. If the person has a long life expectancy (and
is relatively young) then the one time accommodation costs, high as
they are, will cost the state far less than the recurring costs of nursing
home care. For middle-income people, it is often necessary to
take a second mortgage to self-finance the required modifications. This
is complicated by the need to make monthly payments to repay the new
loan, and by the fact that the resale value of the home may be significantly
lower, after the modifications, than before. For wealthy or high-income
people, these expenses can often be met out of pocket. If the quad
has no spouse, companion or parent to live with, it is far easier to
get into, and live in an appropriate assisted living facility or nursing
home. In some areas there may be the option to live in an apartment
shared with other quads, who share the costs (using public funds or
their own funds) of one or two paid aides who assist all three or four
quads. The most difficult arrangements are when a quad and his spouse,
companion or parent desire to live in a private home that has been renovated
to be fully accessible and quad-compatible.
- Assistive Technology Devices, Appliances, and Tools will
be needed in the newly made "accessible and accommodating"
residence. See Part-2 of this paper for information about these devices
and appliances and tools.
- Workplace Accommodations for the employed or self-employed
quadriplegic are often financed by the state’s federally funded "Vocational
Rehabilitation" program. Either the disabled employee or the employer
should contact the state agency for an on-site workplace assessment,
recommendations and funding. The state agency should be contacted as
early as possible, even while the newly disabled quad is still in the
hospital. Assistive Technology Devices will be needed by quads
in the accommodating workplace and are usually paid for by the state
agency. See Part-2 of this paper for information about these devices.
- Transportation Accommodations are also important and may involve
public or private transportation. In many urban and suburban areas,
free or low-cost "Dial A Ride" door-to-door bus or van
service is provided. Generally, this is more reliable and more comfortable
than using public buses or trains. While subway trains are often
not wheelchair accessible, surface trains more often are accessible.
Some public buses can load, transport and unload people in wheelchairs.
Information about this should be available by telephone from your city
or county administrators. AMTRAK trains often are wheelchair
accessible but commuter trains may or not be accessible. As for air
travel, most airlines will load, transport and unload wheelchair
users while storing and transporting the wheelchair. There are certain
safety requirements and restrictions relating to transporting power
chair and their batteries. Air travelers must discuss this with the
airline they plan to fly with, to avoid last minute boarding problems.
Some airlines allow disabled passengers to have a companion along on
a free or discounted fare. Private wheelchair transport vans
are a great convenience for many quads. These vans are costly to own,
maintain and operate. Some people pay van taxi services to transport
them. Others buy their own vans which are driven by the quad, by a family
member or by a paid driver. Part-2 of this paper deals with this subject
in greater technical detail. ALL WHEELCHAIRS, AND w/c OCCUPANTS,
MUST BE SECURED IN PLACE, in vans, TO PREVENT INJURIES OR DEATH IN CASE
OF SUDDEN STOPS OR ACCIDENTS!
For additional information or free technical support,
please email: firstname.lastname@example.org
or contact us by regular mail or telephone:
The National Institute for Rehabilitation Engineering
Box 1088 Hewitt, NJ 07421 U.S.A. Tel. (800) 736-2216.
Copyright © 2002 by the National Institute for Rehabilitation
This paper may be freely copied and freely distributed provided
all copies are complete and unaltered.