As you step from a
London underground train, you are kindly advised to “Mind the GAP.”
Let me develop and adapt that warning to our purpose today.
Traumatic brain injury (TBI) is a major and growing problem in our
energy intense, risk-taking society. Even more important, no one is
immune -everyone in this room, your family, and your friends, are at
risk.
On the positive side, we see the success of our hospitals and acute
rehabilitation programs in saving brain injury victims albeit often with
greater residual handicap.
The challenge begins when some TBI survivors are discharged from acute
care.
Not those who recover
fully while in the acute system and can go home with their family to
resume normal community life.
Not those in
persistent vegetative state or total care states who are easily cared
for in the standard nursing home.
No, it is the other
half - those not ready to reenter the community yet too needy, different
and complex for the standard nursing home. They are slated for the GAP.
This is where the Northeast Center is - and it’s lonely and
frustrating in “the GAP” but we are desperately needed.
The lucky ones come directly to us from the acute setting. But we also
receive the severe, unfortunate TBI survivor who comes to us after a
failed community re-entry trial, inappropriate admission to psychiatric
hospitals or placement in a nursing home inexperienced in brain injury.
Yet they can be helped; they can improve. We discharge an average of 60
people a year to lower levels of care despite many obstacles.
We succeed because we know that people with severe brain injury have a
permanent life change. They are new individuals because in addition to
physical, memory and cognitive sequellae, there is often a loss of
social identity. The loss of confidence and emotional stress is
overwhelming.
For many, there is the added burden of abnormal behaviors. Poor impulse
control, uninhibited sexual advances, aggression, etc. At best, they may
be considered eccentric and tolerated. However, most exhaust family or
friends, become outcasts, get admitted to psychiatric facilities or
worse become wards of the criminal justice system.
In short, these people need a facility that lets people face disability,
rediscover their capabilities, recover from failures, learn from
successes and regain the confidence that they can succeed in the
community.
The “GAP” is the dearth of these facilities - long term
rehabilitation hospitals (LTRH ) that address the total physical;
personal, social and occupational skills these people need to re-enter
the community.
The “GAP” must be filled.
Two essential steps are overdue and sorely needed
Much greater funding
on a par with the size of this huge problem and
Correct designation
of facilities with appropriate regulations to guide program
development and judge performance.
Let’s use Northeast
Center for Special Care as an example.
10 years ago, New York State lacked a program with the scope of supports
needed to take an impaired TBI survivor through recovery to re-enter
community life. Massachusetts was the closest state that had specific
facilities to care for the TBI survivors. However, how does one prepare
to re-enter life in the Bronx from that distance without ready access to
friends and family?
Northeast Center was established to bring these needy New Yorkers back
to their home state. Here, they were nearer to the family and social
supports they need to resume community life if possible.
A former IBM site was rebuilt at a cost of 50 million dollars into a
19-acre campus with 280 beds to begin a stepwise process of preparing
TBI survivors to resume community life. The goal was to make this campus
grow into a demonstration program about responding to all needs of those
with brain and spinal cord injuries. It would fuse private,
not-for-profit, industrial and government forces on one campus to do it
all - to close the GAP.
However, the Northeast Center for Special Care could only be opened as a
nursing home model in New York State. This was an unfortunate limitation
that has haunted the Center ever since.
But the founder’s dream was not easily stifled. The Northeast Center
was the starting place and it needed to be as much like a Long Term
Rehabilitation Hospital as possible to anchor the plan for the campus.
So Northeast Center for Special Care was staffed with almost 100 extra
people - 25 behavior techs, 40 facilitators in activities, music, art,
pet therapy, and special education. Nursing and social work staff was
increased. Three people were dedicated to a community reentry program.
The building was made much larger than a standard nursing home with Eden
environments, exercise courts, library and craft areas.
An innovative program was developed to keep everyone focused on the goal
- a full life in as independent a setting as possible. This was not to
be a warehouse in which to languish but a program to recover skills,
compensate for deficits, and then test the new person. They were not “patients”
but “neighbors” who lived in neighborhoods, not units. They stand on
line, use a post office, use the restaurant, play music, draw and paint,
use a washer and dryer, and, most important, deal with a wide range of
people in many activities.
Ironically, the nursing home designation proved to be the biggest
burden. The OBRA regulations were meant to minimize risk, keep residents
safe and protected and not to be challenged or fail. The Long Term
Rehabilitation Hospital focuses on preparing people to return to an
active life. They experience success and failures here - both are
essential. They are heartened by successes. But they are also encouraged
when they see it is all right to fail, recover, build skills and try
again. This is life in a free society.
For five years, we have been responding to “deficiencies” as a
nursing home. The monetary cost was enormous. A greater cost to our
society has been the diversion of work time, effort, and creativity of
staff and administration from the real needs of our neighbors.
I could go on about our trials. But let us look forward and try to close
the GAP. Two immediate steps that our government could take to help
these very needy people is
1) provide the needed funds and
2) create and encourage long term rehabilitation hospitals that rebuild
the person and help her or him re-enter their community for a satisfying
and productive life.
In essence, Northeast Center for Special Care is a superb model for such
facilities but without re-designation and appropriate funding, it will
be hard to continue, much less expand to show what we really can do for
TBI survivors.
With your help, we will succeed. Remember “Mind the GAP.”
National
Association of State Head Injury Administrators
