This is the first installment of a two-part series on one family's challenge as they seek quality residential services for their son.
It has been a year since I
last posted a new original commentary on Peace-Ability. Some of you may have thought you were finally
rid of me! Ha! Just like a wooden nickel I’m back! Oh I have no idea when I will post
again. Only the Lord knows that. But tonight I am inspired to return to this
faceless forum where I can vent my frustrations and share my views on the world
no matter how vague my vision may be.
First allow me to bring you
up to date since my last post on August 28, 2013. At that time our son Jonathan was living in a
group home for persons with intellectual and developmental disabilities. After carefully researching all the Agencies
in our County that provided residential services to persons with disabilities
and having secured the necessary funding from the State through the
Consolidated Waiver (an exhausting and anxiety-ridden process in itself), we
chose to work with a rather large, well established Christian agency which had
established a wonderful reputation. We
hand picked this agency for our son because we were sure they were the
best. And they were. Once.
Sadly that was quite a few years ago and as we would soon discover things
had changed.
Jonathan was originally told
he was going to move into a home where he would have three house mates, all
more or less his age and similar in abilities.
A transition schedule was given to us by which he would be introduced to
his new home and the other residents. He
got to know the staff and spent quite a few hours with them doing a variety of
things. It concluded with the move-in
date. Jonathan was both excited and a
bit apprehensive as the idea of moving sank in.
Then suddenly, just before the first of two scheduled sleep-overs, he
was told that he would not be moving into this house after all. Rather, he would be moving into a different
home with only one other resident. The
location of this home and the timing of the move were uncertain as it would be
a newly opened facility purchased by the family of the other resident and
leased to the Agency. Jonathan was
heart-broken and stunned. A young person
with his diagnoses does not adapt well to change and uncertainty. As his parents we were disappointed with the
way this was handled. Still, for
Jonathan’s sake we made every effort to remain positive.
An appropriate home was found
and purchased by the other family and renovations were made to bring it up to
code. Jonathan moved into this home in
December 2012, nine months after he was scheduled to move into the first house.
All was well for the first several
months. We soon learned that there would
be considerable turnover of staff, which we found to be curious. We attributed this to the condition of
Jonathan’s house mate, a man in his early sixties who was non-verbal but quite
mobile. He had a tendency to shout and
make extremely loud noises while stomping around the house in a restless
manner. This man was pleasant at times
but could be quite stubborn. When agitated he made it nearly impossible to hold
a conversation with another person.
Jonathan was greatly disillusioned by this but surprisingly accepting of
it, even to the point where he proved to be more effective at calming the man
down than many of the staff members.
As the months passed we
noticed that staffing became increasingly challenging. People came and went, frequently in short
order. By August 2013 the house was on
their third Supervisor. The first one
lasted six months before suddenly and somewhat mysteriously leaving. Next came a two-month interim followed by a
man who never supervised a Group Home in his life. The rest of the staff also saw a drastic
turnover. I am unsure how many staff
they actually had for this place but I can tell you it was at least nine
persons spread over a 24/7 schedule. Most of these were part timers. Within seven months of opening only one of
the original staff members remained in place.
A few positions saw multiple staff changes. That in itself says something was running
amuck.
Persons with autism do not do
well with change or uncertainty. They
crave continuity and thrive on familiarity.
The staffing problem alone was a bit unsettling for Jonathan. I wish I could say it was the biggest
challenge we faced, but it wasn’t. The list of offenses was long.
- The doors and windows of the house were to have alarms on them so if one of the residents wandered outside unsupervised the staff would know it. These alarms were in place but often were not turned on.
- Residents’ diets were to be strictly followed according to doctor’s orders. Our son was placed on a low calorie, low fat, low cholesterol diet by his physician yet he gained 56 pounds in 10 months and became obese and pre-diabetic because the staff ignored these orders.
- Jonathan was assigned a one-on-one to engage him in activities and things of interest. Of course the “things of interest” were meant to be things Jonathan wanted to do. Instead they regularly refused to take him places where he wanted to go or to do the things he wanted, like riding his bike, going for hikes, visiting local playgrounds, shooting hoops or pitching ball. Most of the time the staff simply refused to take him somewhere so he could do these things even if it meant just going outside and staying in the massive back yard that came with the property. Consequently he became house-bound and lethargic.
- Staff took the power cord to Jonathan’s DVD player for “safe keeping”. The next time Jonathan wanted to watch one of his favorite DVD’s no one could find the power cord. It never was located nor replaced.
- Because of his disabilities Jonathan is a very poor house keeper. This is one of the reasons why he is dependent upon others. While he is supposed to try to keep his room neat and his laundry cared for with supervision, the fact was the staff did all his laundry and in the process completely ruined several clothing items because they did not know how to use a washing machine & a dryer. Seriously! With regards to cleaning and picking up after himself it just never happened. His bedroom was a disaster zone. Dirty laundry lay mostly in one corner for weeks at a time; clothes, trash, and toys were strewn all over the place; his bed was seldom made unless we came and helped him make it; his bed sheets were only washed about once a month. And the dust was thick on all the furniture.
- The bathroom was an issue of its own. Jonathan does not take showers. He prefers tub baths. The bathtub had a pronounced ring of dirt and grime encircling it. The rubber bath mat was gross. No other word describes it. It was never rinsed off nor hung up to dry following use. Predictably it was covered with mold and mildew. We complained many times about it but nothing was ever done to address the issue.
- According to the Department of Public Welfare regulations governing group homes such as this one parents or loved ones of residents could manage their money if they were legally recognized as durable Power of Attorney or as Representative Payee (a Social Security designation). From the beginning we choose to continue managing our son’s financial concerns. This did not sit well with the Agency. They repeatedly asked us to relinquish such rights and name the Agency as the keepers of the cash. We chose not to.
- Once when Jonathan was meeting with his behavioral therapist, with his mother and the House Supervisor in the room, Jonathan began to tell the therapist how scared he was because the house mate hits him and he was afraid he would be hurt. Immediately the House Supervisor yelled at Jonathan and said that what he was telling them was not true and he should not be telling lies. This man became extremely loud, rude, and animated right there in the therapist’s office. Needless to say the therapist was shocked and boldly took control by setting him in his place. She later confided to us that she did document that outburst and passed it on to appropriate people. Jonathan told us much later that such outbursts were not at all unusual for this man, who would call Jonathan into his office and “yell” at him. Jonathan claimed he did not know why he was being yelled at.
There were numerous trivial
things that bothered us but most of them were not all that serious. The list above represents our primary
concerns. But the final two complaints
came in October and November of 2013.
Jonathan attends Therapeutic
Horseback Riding once a week for an hour and 15 minutes. Oddly this is not covered by the Consolidated
Waiver therefore he must pay for it himself out-of-pocket. Because it is important to him and we have
seen the positive results from it we decided to continue with this service
while he was living at the Group Home.
One day the Director of the
stable called us and asked why Jonathan was not attending his lessons. We learned that for over two months his Staff
either did not take him to the stable for riding lessons or arrived there as
much as 55 minutes late – long after the horse was unsaddled and put back in
his stall. Not once did they ever call
to inform the stable people that they were running late or would not be
present. Jonathan was paying for lessons
he never received.
As serious as that was, it
doesn’t come close to what I am about to reveal.
I already told you the house
mate was non-verbal, lower functioning and mobile. He also had a tendency to hit things. Counters, tables, cabinets, furniture all felt
the impact of his fist at one time or another.
So did Jonathan. On three
occasions that we know of Jonathan reported to us that this man had hit him. Several other times Jonathan escaped only by
avoiding the hand and getting away.
Staff also had been hit. In fact
one staffer told us he had been hit by this person and that others had been,
too. My wife was smacked by him
once. He took her completely by
surprise, coming quickly around an overstuffed chair to approach her from just
behind her left shoulder. He reached out
and smacked her on the back as he quickly passed by. The med tech saw it and said to her “He just hit you, didn’t her?” She responded emphatically, “Yes!”
I also was hit hard on the upper right arm.
When we had the opportunity
we mentioned to the Administrators the three times Jonathan said he was
hit. Each time they denied it. “Oh,
that’s just his way of shaking hands.
He’s trying to be friendly,” we were told the first time. Out of concern for our son’s safety we pushed
the issue further, adding to it the times we have been hit by him. The Administrators then responded by
declaring, “No, he did not hit you. The staff would be required to document that
if it happened and there was no documentation.
It didn’t happen.”
By this time we had it. The weight gain, the lost riding lessons, the
unsanitary conditions and the threat of violence had brought us to the boiling
point. We asked to have Jonathan moved
into another house when one would become available. At a specially called meeting with the CEO,
the Director of Residential Care, the Housing Coordinator, the House Supervisor,
and the Supports Coordinator from the County, the Agency responded to our
request with a resounding “No!” Jonathan
had only been living in this home 9 months at that point and that was much too
soon to even talk about other options, according to the Director of Residential
Services. Under no conditions could
Jonathan be moved into another home within their system. Many things were discussed at the meeting but
nothing was resolved. A second meeting
was scheduled for a month later.
At the second meeting we were
immediately given a list of demands by the Agency. The list contained thirteen points – an
ominous omen, perhaps. Of greatest
concern to us were the following.
- “The family will limit email communication to only health and welfare concerns.”
- “Communications with Direct Care Professionals by parents are limited to imminent health and safety concerns.”
- Medical and behavioral appointments will be scheduled by the Agency and will always include an Agency Staff person even to the exclusion of the family. (In other words they wanted to sit in on all his appointments, including his therapy sessions, while attempting to keep us in the dark.)
- Finally, they demanded that we give them $100 per month to use for Jonathan as they saw fit. Together with his out-of-pocket room and board it meant that Jonathan would be paying the Agency 86% of his total SSI monthly check. This “stipend”, as they called it, was to be given to them regardless of how much was spent from previous months, allowing for the possibility of building up a sizable sum of pocket change that may or may not be used according to their discretion.
These terms were presented to
us in a written document that was non-negotiable. If we did not agree to its terms Jonathan
could not remain with the Agency. Take
it or leave it – it was that simple.
The document violated
numerous provisions of PA. Code 6400, the “manual” for licensed group homes
within the Commonwealth of Pennsylvania.
It was both illegal and unethical.
In short, they wanted us to disassociate ourselves from our son. They absolutely refused to consider moving
him under any circumstances. So we made
the choice instead by moving him out of the Agency’s care and back home with
us.
It was a difficult decision
to make. However, it was made easier by
our son’s constant plea to get him out of there.
It is hard to believe in this
day and age that any licensed facility could be so thoughtless and
irresponsible as this one. Knowing they
claim to be a Christian Agency is especially difficult to swallow. It only proves that anyone, or any
organization, can take on the Name of Christ but not live out the Love of Christ.
Late in October 2013 Jonathan
returned home to live with us temporarily until another location could be
found. He was in the Group Home for 10 ½
months. As I write this he has been back
with us for the just under 10 months.
Our search for another residential
agency is still ongoing. It has some interesting
details of its own, which I will share in my next post. Until then I leave you with the words of
Hebrews 11:9
“By faith he [Abraham] made his home in the Promised
Land like a stranger in a foreign country; he lived in tents, as did Isaac and
Jacob, who were heirs with him of the same promise.”
G. D. Gehr
August 11, 2014
