Re: What to do?

[Guest guest]

Is Mark able to let people know when he is in discomfort? Does his behavior

change when he is in pain or sick? Is the staff aware of the signs he may

exhibit? It was good that you took him to the doctor because now it is

documented. With something like this I personally would not give 3 strikes.

We

are talking about health care. I would go in and talk with the supervisor and

if they are not aware of what to look for when Mark is in need of help then I

would insist that they be trained to look for signs from Mark that he is in

distress. Does Mark sign? If not could you teach him a few basic signs

like, hurt, help, sick, eat, drink etc. and also teach the staff the same

signs?

Is Mark prone to ear infections? If so, then maybe they could check his

ears each morning as a routine. If he has rashes then maybe check to see what

detergent is being used on the bedding and clothes.

Trishasmom (Carol)

She isn't Typical, She's Trisha!

[Guest guest]

Hi ,

Take pictures immediately! Call me. I am chasing a 2yr old and having trouble

typing

Charlyne

G Baum wrote:

Hi group,

I need your opinions before I pursue any further. My son Mark, and you

can read about him in the very first post I posted, is 16 non vocal, DS,

Intermittent Explosive Disorder, Autism Spectrum has been in a

residential treatment facility since Sept. 2004. He recently has been

placed in a new RTF because the old RTF closed down. Anyhow, he was

admitted to this new RTF on May 11, 2005. In the first two weeks, he

contracted conjunctivitis (pink eye). I picked him up yesterday for a

weekend pass, and as I was putting him in the car, noticed that his eyes

were red, (probably from allergies, but the staff did not leave me with

any eye drops) and puss was running out his ear. I turned to confront

the staff that dropped him off, but they were gone. I called the RTF and

was told by the nurse that no one noticed the ear infection and he is

watched closely. Okay... so I take him to the doctors office and the

Nurse practitioner can't even see in Mark's ear because of all the puss

and how swollen it is. She gives me two scripts for antibiotics and eye

drops for his eyes.

When I get home, Mark changed his clothes and put on another shirt.

That's when we noticed the four inch rash in a circular pattern in the

crease of his left arm. Okay, so I called the RTF again. I was told the

same thing. Mark is monitored closely and we didn't see this. Hmmm... so

I take him back to the doctor's office. This time we saw another doctor

because it was later in the day. I explained about the ear infection and

the rash and the RTF yada, yada. I asked him his opinion on the

conditions that I saw on Mark an if he thought they could have just

happened in the time I picked him up. He seemed to side with the RTF

saying that I should give them three strikes and then talk to a

supervisor. That the ear could have just begun to ooze when I saw him

and that the rash could have been the same. Okay...

My question to you is, what do you think? We are in a terrible

situation because if Mark comes back home, we don't have a school

placement for him, nor daycare. I contacted legal council and am

awaiting a reply. Any suggestions? We are at our wits end and

unfortunately it is at my son's expense.

Thanks,

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[Guest guest]

i hoping those with more legal experience and older children will have some

good advice many prayers coming your way. shawna

[Guest guest]

,

has been in three different residential facilities. Even at age 42

it is still a concern even though he is in what is considered the best

home of this agency. At age 16 it can be a great worry for you about

Mark but as someone once told me you pick your battles. At each

facility lived the staff were expected to see they take a bath or

shower each night. During this time staff could observe for any rashes

or other health related things going on. If the ear infection just

began surely the staff would notice drainage on his pillow. We can only

second guess from a distance. Being an RN I worked an agency as

Director of Health and Records and taught about observing for these

things, a lot depends on the staff and how they observe. This has been

so true in 's residential homes, there have been the good staff who

are attuned to observing for things and those who are not.

When has come home on weekends I too have observed the beginning of

wheezing and got him started on medication so it doesn't develop into a

more serious condition. He has also had rashes which has been

determined in two different facilities due to the laundry detergent they

use as Carol had suggested checking into. Just recently when he began

at the new house he came home with rashes and they knew but hadn't

tracked it down until I mentioned about 's past experience with

rashes and laundry soap. 's doctor recommended they use

hydrocortisone cream on the rash. These agencies get some strong

industrial laundry detergent and it is not easy on the skin. We have

always used Tide and he never had any problem, the new house has

switched to Tide. It was interesting when I was volunteering in the

nurses office of this agency the nurse had a call about a rash on a

consumer. She asked them what laundry soap they were using and told

them they should use Tide.

The best thing is as you have done talking to the facility staff and

taking Mark to the doctors to get treated. I would get copies of the

doctor's notes from each visit. Take pictures as Charlyne has suggested

and see how this goes. Keep this information if things don't improve

then you have documentation. As we used to say in nursing if it isn't

written it didn't happen.

It is not easy when our sons/daughters are in residential facilities at

a distance and we feel they are going through this without us as we know

we would do something quicker. Good luck. Louise Mom to 42,

DS/Deaf/ASD

What to do?

Hi group,

I need your opinions before I pursue any further. My son Mark, and you

can read about him in the very first post I posted, is 16 non vocal, DS,

Intermittent Explosive Disorder, Autism Spectrum has been in a

residential treatment facility since Sept. 2004. He recently has been

placed in a new RTF because the old RTF closed down. Anyhow, he was

admitted to this new RTF on May 11, 2005. In the first two weeks, he

contracted conjunctivitis (pink eye). I picked him up yesterday for a

weekend pass, and as I was putting him in the car, noticed that his eyes

were red, (probably from allergies, but the staff did not leave me with

any eye drops) and puss was running out his ear. I turned to confront

the staff that dropped him off, but they were gone. I called the RTF and

was told by the nurse that no one noticed the ear infection and he is

watched closely. Okay... so I take him to the doctors office and the

Nurse practitioner can't even see in Mark's ear because of all the puss

and how swollen it is. She gives me two scripts for antibiotics and eye

drops for his eyes.

When I get home, Mark changed his clothes and put on another shirt.

That's when we noticed the four inch rash in a circular pattern in the

crease of his left arm. Okay, so I called the RTF again. I was told the

same thing. Mark is monitored closely and we didn't see this. Hmmm... so

I take him back to the doctor's office. This time we saw another doctor

because it was later in the day. I explained about the ear infection and

the rash and the RTF yada, yada. I asked him his opinion on the

conditions that I saw on Mark an if he thought they could have just

happened in the time I picked him up. He seemed to side with the RTF

saying that I should give them three strikes and then talk to a

supervisor. That the ear could have just begun to ooze when I saw him

and that the rash could have been the same. Okay...

My question to you is, what do you think? We are in a terrible

situation because if Mark comes back home, we don't have a school

placement for him, nor daycare. I contacted legal council and am

awaiting a reply. Any suggestions? We are at our wits end and

unfortunately it is at my son's expense.

Thanks,

--

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[Guest guest]

i have worked in nursing homes for most of my nursing career, and agree

here, i know occasionally i hate it when families keep at you but i always

remember i would be just the same if it was my family memeber, and most do

appreciate the hlep you are offering as no one knows him or her as you would.

Most

care facilities do care and try their best, but remember there is a small

amount of staff compared to the number of residents, and its hard to notice

everything. Just keep track of everything, and if continues take it to the

administrator, or to the state, there should be names and numbers posted for

everyoneto see in the need to make valid complaints concerning the facility and

cares. shawna

[Guest guest]

Circular rash - asked the doctor if it could be ring worm?? or (I live in

Lyme country) a bullseye like from a tick or spider bite?

Life in an RTF - this is like a nursing home - the people who run the RTF

need to know that you are an involved, caring family member and that you

will be visiting, checking, making friends with staff and that you want to

kow EVERYTHING that is done.

Ask how they check non-verbal clients for illness, especially with explosive

disorder as this is often worsened by illness.

Pink eye could be sudden onset - unusual but possible. Pus from ear with no

complaint or look of discomfort???? How was his behavior, how did he sleep,

etat, etc.......

Just my opinion.

Sara - Choose to make lemonade, not complain about the lemons.

>From: Csvillars@...

>Reply-To:

>To:

>Subject: Re: What to do?

>Date: Sat, 18 Jun 2005 10:00:30 EDT

>

>Is Mark able to let people know when he is in discomfort? Does his

>behavior

>change when he is in pain or sick? Is the staff aware of the signs he may

>exhibit? It was good that you took him to the doctor because now it is

>documented. With something like this I personally would not give 3

>strikes. We

>are talking about health care. I would go in and talk with the supervisor

>and

>if they are not aware of what to look for when Mark is in need of help

>then I

>would insist that they be trained to look for signs from Mark that he is

>in

>distress. Does Mark sign? If not could you teach him a few basic signs

>like, hurt, help, sick, eat, drink etc. and also teach the staff the same

>signs?

>Is Mark prone to ear infections? If so, then maybe they could check his

>ears each morning as a routine. If he has rashes then maybe check to see

>what

>detergent is being used on the bedding and clothes.

>

>Trishasmom (Carol)

>She isn't Typical, She's Trisha!

>

>

>

[Guest guest]

Thanks so all of you who responded with suggestions and prayers. Mark is

doing just fine. No he never complains (his non vocal) or shows any

emotion, we usually find out that he has an ear infection either when

there is drainage from his ear or his behaviors escalate. I asked for

documentation for Mark's behaviors this past week, but have not received

them. Actually I asked for them earlier in the week before this episode

occurred. I really have to stay on top of them with documentation. It's

almost like they don't want to disclose anything. As far as the rash,

the doctor said it was dermatitis and with the cream it has cleared up.

The same for his face. Mark, being a 16 year old boy, has occasional

breakouts, but it's amazing what happens when you WASH his face. In just

two days, it has cleared up. I'm sorry, but I can't see how the RTF says

that Mark is being supervised, I know that no one can take as good as

care for your children as their parents, but something so simple as

washing his face? I have a house full of people coming over today and

then tomorrow I take Mark back to the RTF. In the meantime, I will be

doing my homework and getting my son out of the RTF as soon as

possible. Thanks again to all and Happy Father's Day to all the Dads!

>

[Guest guest]

, I found this information on RTC and thought maybe it would

help you go to the section of this info Titled Residential Treatment

Centers. I am sorry this is so long I tried to copy just that

section but I goofed.I found this at

www.surgeongenral.gov/library/mentalhealth/chapter3/sec7.html. It

claims if a child has aggressive behavoirs A RTC is not the place

for them and it explains why. I hope this helps you decide. Cyndi

Services Interventions

Treatment Interventions

This section examines the effectiveness of such treatment

interventions as outpatient, partial hospitalization/day,

residential, inpatient treatments, and medication. Much of the

research on their effectiveness deals with children's outcomes

largely independent of diagnosis. As noted earlier in this chapter

(see Treatment Strategies), practitioners and researchers previously

shied away from diagnosis because of the inherent difficulty of

making a diagnosis, concerns about labeling children, and the

limited usefulness of DSM classifications for children. Each

intervention was developed to treat a host of mental health

conditions in children and adolescents. Each also was delivered in a

wide range of settings. Over time, the combination of interventions

and settings, with the exception of medication, became

conceptualized as " treatments, " which stimulated research on their

effectiveness (Goldman, 1998). They are not, however, treatments in

the conventional sense of the term because they are less specific

than other treatments with respect to indications, intensity

(i.e., " dose " ), and elements of the intervention. There is little

research describing treatment in actual clinical settings.

Outpatient Treatment

The term " outpatient treatment " covers a large variety of

therapeutic approaches, with most falling into the broad theoretical

categories of the psychodynamic, interpersonal, and behavioral

psychotherapy. Outpatient psychotherapy is the most common form of

treatment for children and adolescents, utilized annually by an

estimated 5 to 10 percent of children and their families in the

United States (Burns et al., 1998). It is also the most extensively

studied intervention and, with over 300 studies, has the strongest

research base (Weisz et al., 1998). Outpatient therapy is offered to

individuals, groups, or families, usually in a clinic or private

office. The duration of treatment varies from 6 to 12 weekly

sessions to a year or longer. Newer outpatient interventions (e.g.,

case management, home-based therapy) that were developed more

recently for youth with severe disorders are provided with greater

frequency (i.e., daily) in the home, school, or community. Those

interventions are reviewed later in this chapter.

The strongest support for the effectiveness of outpatient treatment

comes from a series of meta-analyses. Meta-analyses are an important

type of research methodology, described in Chapter 1, that enable

one to combine research findings from separate studies. Nine meta-

analyses, published between 1985 and 1995, probed the effectiveness

of research on individual, group, and family therapy for children

and adolescents (Casey & Berman, 1985; Hazelrigg et al., 1987; Weisz

et al., 1987; Kazdin et al., 1990; Baer & Nietzel, 1991; Grossman &

1992; Shadish et al., 1993; Weisz & Weiss, 1993; Weisz et

al., 1995). Although these meta-analyses vary in time period, age

groups, and meta-analytic approach, they were largely restricted to

studies of treatment given in a research clinical setting, and their

findings are relatively consistent. The major findings indicated

that the improvements with outpatient therapy are greater than those

achieved without treatment; the treatment is highly effective, as

was found in meta-analyses of adults (Brown, 1987); and the effects

of treatment are similar, whether applied to problems such as

anxiety, depression, or withdrawal (internalizing problems) or to

hyperactivity and aggression (externalizing problems) (Kazdin, 1996).

Given strong evidence of efficacy for outpatient treatment, the

question of applicability to real-world settings has been examined.

A meta-analysis was performed on studies of the effectiveness of

various types of outpatient treatment, regardless of whether their

efficacy had been established through research (Weisz et al., 1995).

The researchers were able to identify only nine studies of treated

children in nonresearch clinical settings where therapy was a

regular service of the clinic and was carried out by practicing

clinicians. Those nine studies demonstrated little or no effect.

Clearly, real-world therapy was found to be less effective than that

provided through a research protocol. A variety of factors may

account for the gap, including less attention in real-world settings

to careful matching of patients with treatments, less adherence to a

treatment protocol, and less followup care.

Partial Hospitalization/Day Treatment

Partial hospitalization, also called day treatment and partial care,

has been a growing treatment modality for youth with mental

disorders. Research on partial hospitalization as an alternative to

inpatient treatment generally finds benefit from a structured daily

environment that allows youth to return home at night to be with

their family and peers.

Partial hospitalization is a specialized and intensive form of

treatment that is less restrictive than inpatient care but is more

intensive than the usual types of outpatient care (i.e., individual,

family, or group treatment). The most frequently used type of

partial hospitalization is an integrated curriculum combining

education, counseling, and family interventions. The setting, be it

a hospital, school, or clinic, may be tied to the theoretical

orientation of the treatment, which ranges from psychoanalytic to

behavioral. Partial hospitalization has also been used as a

transitional service after either psychiatric hospitalization or

residential treatment, at the point when the child no longer needs

24-hour care but is not ready to be integrated into the school

system. It also is used to prevent institutional placement.

Overall, the research literature points to positive gains from

adolescent use of day treatment, but most of the studies are

uncontrolled. Gains relate to academic and behavioral improvement;

reduction in, or delay of, hospital and residential placement; and a

return to regular school for about 75 percent of patients (Baenen et

al., 1986; Gabel & Finn, 1986). Day treatment programs are not being

used as frequently as they might be because third-party payers are

reluctant to support this form of treatment. They claim that the

modality is ambiguous, that it induces demand among those who would

not otherwise seek treatment, and that its length, treatment

outcomes, and costs are unpredictable (Kiser et al., 1986). Research

is needed to address these issues.

To date, the only controlled study of partial hospitalization

compared outcomes for young children (ages 5 to 12) with disruptive

behavior disorders who received intensive day treatment with

children who received traditional outpatient treatment services (in

fact, a waiting list control) (Grizenko et al., 1993). The results

at 6 months favored day treatment in reducing behavior problems,

decreasing symptoms, and improving family functioning.

Findings from uncontrolled studies of partial hospitalization are

informative, although not conclusive. Based on approximately 20

studies, multiple benefits have been reported even over the long

term (see reviews by Kutash & , 1996; Grizenko, 1997). In

general, child behavior and family functioning improve following

partial hospitalization. Findings for improved academic achievement

are mixed and possibly suggest that implementation of school-based

models should be considered. About three-fourths of youth are

reintegrated into regular school, often with the help of special

education or other school- or community-based services. Several

uncontrolled studies found that day treatment could prevent youth

from entering other costly placements (particularly inpatient and

residential treatment centers), which suggests that partial

hospitalization may reduce overall costs of treatment (Kutash &

, 1996). Finally, family participation during and following

day treatment is essential to obtaining and maintaining results

(Kutash & , 1996).

Residential Treatment Centers

Residential treatment centers are the second most restrictive form

of care (next to inpatient hospitalization) for children with severe

mental disorders. Although used by a relatively small percentage (8

percent) of treated children, nearly one-fourth of the national

outlay on child mental health is spent on care in these settings

(Burns et al., 1998). However, there is only weak evidence for their

effectiveness.

A residential treatment center (RTC) is a licensed 24-hour facility

(although not licensed as a hospital), which offers mental health

treatment. The types of treatment vary widely; the major categories

are psychoanalytic, psychoeducational, behavioral management, group

therapies, medication management, and peer-cultural. Settings range

from structured ones, resembling psychiatric hospitals, to those

that are more like group homes or halfway houses. While formerly for

long-term treatment (e.g., a year or more), RTCs under managed care

are now serving more seriously disturbed youth for as briefly as 1

month for intensive evaluation and stabilization.

Concerns about residential care primarily relate to criteria for

admission; inconsistency of community-based treatment established in

the 1980s; the costliness of such services (Friedman & Street,

1985); the risks of treatment, including failure to learn behavior

needed in the community; the possibility of trauma associated with

the separation from the family; difficulty reentering the family or

even abandonment by the family; victimization by RTC staff; and

learning of antisocial or bizarre behavior from intensive exposure

to other disturbed children (Barker, 1998). These concerns are

discussed below.

In the past, admission to an RTC has been justified on the basis of

community protection, child protection, and benefits of residential

treatment per se (Barker, 1982). However, none of these

justifications have stood up to research scrutiny. In particular,

youth who display seriously violent and aggressive behavior do not

appear to improve in such settings, according to limited evidence

(Joshi & Rosenberg, 1997). One possible reason is that association

with delinquent or deviant peers is a major risk factor for later

behavior problems (Loeber & Farrington, 1998). Moreover, community

interventions that target change in peer associations have been

found to be highly effective at breaking contact with violent peers

and reducing aggressive behaviors (Henggeler et al., 1998). Although

removal from the community for a time may be necessary for some,

there is evidence that highly targeted behavioral interventions

provided on an outpatient basis can ameliorate such behaviors

> Hi group,

> I need your opinions before I pursue any further. My son Mark,

and you

> can read about him in the very first post I posted, is 16 non

vocal, DS,

> Intermittent Explosive Disorder, Autism Spectrum has been in a

> residential treatment facility since Sept. 2004. He recently has

been

> placed in a new RTF because the old RTF closed down. Anyhow, he

was

> admitted to this new RTF on May 11, 2005. In the first two weeks,

he

> contracted conjunctivitis (pink eye). I picked him up yesterday

for a

> weekend pass, and as I was putting him in the car, noticed that

his eyes

> were red, (probably from allergies, but the staff did not leave me

with

> any eye drops) and puss was running out his ear. I turned to

confront

> the staff that dropped him off, but they were gone. I called the

RTF and

> was told by the nurse that no one noticed the ear infection and he

is

> watched closely. Okay... so I take him to the doctors office and

the

> Nurse practitioner can't even see in Mark's ear because of all the

puss

> and how swollen it is. She gives me two scripts for antibiotics

and eye

> drops for his eyes.

> When I get home, Mark changed his clothes and put on another

shirt.

> That's when we noticed the four inch rash in a circular pattern

in the

> crease of his left arm. Okay, so I called the RTF again. I was

told the

> same thing. Mark is monitored closely and we didn't see this.

Hmmm... so

> I take him back to the doctor's office. This time we saw another

doctor

> because it was later in the day. I explained about the ear

infection and

> the rash and the RTF yada, yada. I asked him his opinion on the

> conditions that I saw on Mark an if he thought they could have

just

> happened in the time I picked him up. He seemed to side with the

RTF

> saying that I should give them three strikes and then talk to a

> supervisor. That the ear could have just begun to ooze when I saw

him

> and that the rash could have been the same. Okay...

> My question to you is, what do you think? We are in a terrible

> situation because if Mark comes back home, we don't have a school

> placement for him, nor daycare. I contacted legal council and am

> awaiting a reply. Any suggestions? We are at our wits end and

> unfortunately it is at my son's expense.

>

> Thanks,

>

[Guest guest]

In a message dated 6/21/05 2:15:26 P.M. Central Daylight Time,

writes:

> Hi group,

> I need your opinions before I pursue any further. My son Mark,

and you

> can read about him in the very first post I posted, is 16 non

vocal, DS,

> Intermittent Explosive Disorder, Autism Spectrum has been in a

> residential treatment facility since Sept. 2004. He recently has

been

> placed in a new RTF because the old RTF closed down. Anyhow, he

was

> admitted to this new RTF on May 11, 2005. In the first two weeks,

he

> contracted conjunctivitis (pink eye). I picked him up yesterday

for a

> weekend pass, and as I was putting him in the car, noticed that

his eyes

> were red, (probably from allergies, but the staff did not leave me

with

> any eye drops) and puss was running out his ear. I turned to

confront

> the staff that dropped him off, but they were gone. I called the

RTF and

> was told by the nurse that no one noticed the ear infection and he

is

> watched closely. Okay... so I take him to the doctors office and

the

> Nurse practitioner can't even see in Mark's ear because of all the

puss

> and how swollen it is. She gives me two scripts for antibiotics

and eye

> drops for his eyes.

> When I get home, Mark changed his clothes and put on another

shirt.

> That's when we noticed the four inch rash in a circular pattern

in the

> crease of his left arm. Okay, so I called the RTF again. I was

told the

> same thing. Mark is monitored closely and we didn't see this.

Hmmm... so

> I take him back to the doctor's office. This time we saw another

doctor

> because it was later in the day. I explained about the ear

infection and

> the rash and the RTF yada, yada. I asked him his opinion on the

> conditions that I saw on Mark an if he thought they could have

just

> happened in the time I picked him up. He seemed to side with the

RTF

> saying that I should give them three strikes and then talk to a

> supervisor. That the ear could have just begun to ooze when I saw

him

> and that the rash could have been the same. Okay...

> My question to you is, what do you think? We are in a terrible

> situation because if Mark comes back home, we don't have a school

> placement for him, nor daycare. I contacted legal council and am

> awaiting a reply. Any suggestions? We are at our wits end and

> unfortunately it is at my son's expense.

>

> Thanks,

>

,

Sorry things aren't going well for your son. My son entered a group

home last fall. I managed a group home for children with developmental

disabilities before came to us.

I would watch things closely and talk to staff/nurse about the fact that

your son doesn't exhibit typical symptoms when ill.

I know from my experiences that it is possible for caring thorough

caregivers to miss things. I once sent a boy home for a visit only to have him

go into

grand mal seizure and puss flowing from his ear three hours after leaving.

There was no hint that anything was wrong when he was at the group home. He

was happy and interacting with staff. His mother agreed that he was fine when

she picked him up and nothing was wrong for the first few hours.

On the other hand I see nothing wrong with calling the facility either your

son's case manager or a supervisor and express your concerns.

Karyn