Disaboom Disability Activism & Advocacy

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Embellishurlife — Mon, 27 Oct 2008 04:31:24 GMT

Thanks TriDog! I sure hope everything works out in the best interest of these adult "children."

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

TriDog — Mon, 27 Oct 2008 02:10:38 GMT

Yikes! What a mess. This is entirely crazy. We were saying things like this would happen back when I was teaching at the Fernald State School. But still 200K a year per client is a large amount of money. One must wonder if there is a more cost affective way to provide the services. Good Luck and let’s hope for the best for everyone concerned.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Embellishurlife — Mon, 27 Oct 2008 01:31:56 GMT

Yes...I know it sounds CrAzY, because it is in fact CrAzY! Apparently the class action suit speaks for our adult children who can not and puts the words into their mouths that now that they are "adults", they need to be in a group home setting. Not taking into consideration that a "group home" is not able to meet their vast medical needs and 24/7 mointoring, nor is it an environment where they would be protected in the way that they need to be. They have a very unique community where they are and it fits them perfectly, that's why many of them have made it into adulthood.

I'm not sure about that....taking them home...I would think that they could (physically) take them home at anytime. However, I know that most of the adult children that are residing at SH were taken care of at home for many years until it was impossible to meet their medical needs (ie hospital visits 3-4 times per week with life threatening issues), constant infections, frequent apnea, multiple uncontrolled seizures, lack of consistant nursing support, not being able to provide an educational piece - due to constant medical issues etc, etc. When these kids are sick, 9 times out of 10 it is impossible to tell what they're suffering from, there are sooo many different Specialists to consult with, that you end up going to the Emergency Room and the staff there has no clue where to start - which makes the quality of life a living nightmare for this child who can not verbalize and their extremely fragile - they can not stand up to all the poking and prauding, repeated tests and wasted procedures.

That's why SH is a perfect fit for them and also why Boston Children's Hospital started such a place (SH was previously owned by Children's Hosp). The staff there are completely familiar with this population, the nurses are able to do simple tests right there so that they don't have to transport the children to and fro the hospital multiple times a week. A Doctor comes to the facility each morning to address issues and order medications, there are also "clinics" held once a month or so where individuals are evaluated for equiptment etc. The educational piece is also provided within the building. Their health stability and quality of life are the most important factors and the driving force for placement at SH.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

TriDog — Sun, 26 Oct 2008 23:30:02 GMT

Embellishurlife:
The Plaintiffs' Attorneys and the Department of Mental Retardation (acting for the Commonwealth) have refused to discuss money with the families or the court. They contend that this is strictly a matter of "right to live in the community." They will not be satisfied until every single individual they view as being physically capable of surviving "in the community" has been moved out of any "nursing home." They say that they do not want to move anyone "into the community" if their guardian does not agree to this, but that they MUST do so according to Federal law and therefore cannot make any commit not to move individuals "into the community" if they, DMR, decide that it can be done.

That is the irony of the situation: the bureaucrats insist that they can make better quality of life judgments than can the patients and their guardians. The families are absolutely convinced that the Plaintiffs' Attorneys prefer that their children perish "in the community" than live in a pediatric skilled nursing facility, and are asking the citizens to do what the state government is refusing to do, offer protection to the patients from the Plaintiffs' Attorneys.

I’m confused. So it's not an issue on who's paying for the Seven Hills. Is sounds as if the fight is about who the legal guardian is.

If the guardian (families) doesn’t want them to go into the community, do they have the right to take them home?

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Embellishurlife — Sun, 26 Oct 2008 21:34:07 GMT

TriDog,

The Plaintiffs' Attorneys and the Department of Mental Retardation (acting for the Commonwealth) have refused to discuss money with the families or the court. They contend that this is strictly a matter of "right to live in the community." They will not be satisfied until every single individual they view as being physically capable of surviving "in the community" has been moved out of any "nursing home." They say that they do not want to move anyone "into the community" if their guardian does not agree to this, but that they MUST do so according to Federal law and therefore cannot make any commit not to move individuals "into the community" if they, DMR, decide that it can be done.

That is the irony of the situation: the bureaucrats insist that they can make better quality of life judgments than can the patients and their guardians. The families are absolutely convinced that the Plaintiffs' Attorneys prefer that their children perish "in the community" than live in a pediatric skilled nursing facility, and are asking the citizens to do what the state government is refusing to do, offer protection to the patients from the Plaintiffs' Attorneys.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

TriDog — Sun, 26 Oct 2008 14:58:36 GMT

Embellishurlife, If the 200k per year were made available, would the clients be able to stay at Seven Hill?

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Embellishurlife — Sun, 26 Oct 2008 02:15:08 GMT

The purpose of the petition is to allow the families of Seven Hills to be decertified from inclusion in the FEDERAL Rolland Plaintiff Class Action Suit to which they were NEVER informed that they were part of to begin with. How can it be that in a "free country" you can be compelled to join a class action AGAINST your will? This is reckless judicial abuse!

We, and not the state or courts, are the spokespersons for our loved ones who reside at Seven Hills and who are unable to speak for themselves. We have the right to seek out the best fesible care for them. We are open to being informed of alternatives to continued care at Seven Hills. We oppose having our loved ones FORCED to leave the facility if that is against our best judgments.

These are physically FRAGILE people, not mentally retarded. The government did not even try to understand who these people are; or what their needs are...which are being taken care of with extreme competence. To take them out of this environment will essentially condemn them to death. How can ANYBODY stand for this?

The importance of institutionalization for some of our citizens with profound disabilities (both physical and mental) has been slowly and tragically diluted over the years. The same thing happened years ago for those with mental illness and we are now seeing the error in the decisions that were made to hand out medications and release people to the streets.

The reason our children are at Seven Hills is that the care and support their lives depend on don't exist in the "community". They have their community at Seven Hills and we will not allow them to be stuffed away in a corner to satisfy a quota.

Please join us by signing our petition and protecting our children: http://www.avertrollandtragedy.org/index.htm

Recent newspaper article covering our protest: http://www.lowellsun.com/ci_10766612

Thank you.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

TriDog — Mon, 20 Oct 2008 23:59:29 GMT

squabwithfibro:
I'm not a resident of Massachusett's, however, couldn't you say, a "more effecient" way of spending money without compromising service, instead of calling it "cheaper?". Cheaper kind of implies....not as good.

Good point. Not getting quality care is not what I was implying. Either way, I think I got my point across. Our state has been on a spending spree for years.

The tax payers are at their wits end. People are in for a real shock if Question #1 passes. It’s the proposal to do away with state income taxes. But that's a different topic for a different thread.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

squabwithfibro — Mon, 20 Oct 2008 22:12:29 GMT

TriDog:
200k a year is not the Big Dig, but it’s pretty pricey. One has to wonder if there is a cheaper way to get the same services.

I'm not a resident of Massachusett's, however, couldn't you say, a "more effecient" way of spending money without compromising service, instead of calling it "cheaper?". Cheaper kind of implies....not as good. In the State School, where I taught, students did not receive "direct services" from PT, OT, Speech, and Vision Therapists daily. That would be less expensive! We, the staff, were instructed, how to implement the program which the parent and contributing professionals would "staff" to develop appropriate and attainable goals and benchmarks. In that setting, I would think it could/would be the responsibility of a QMRP (Qualified Mental Retardation Professional) to manage the program of an individual in such a facility. That could reduce expenses, without diminishing programming. Some of the programming are things para professionals can be implementors of with a nice result. In fact, often, the caregivers, sometimes get better performance from the individual, since they have a more intimate relationship with them. Is this facility a place where medical professionals receive some of their "training"? That might be a another way of "justifying" the expense. Not picking on you, TriDog....it's a moral delema not only Massachusetts had to deal with.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

TriDog — Mon, 20 Oct 2008 20:08:56 GMT

Embellishurlife:
No, out of state voters do not have an influence on how Massachusetts spends it's tax dollars.

This is exactly the purpose of petitions. If you are not trying to apply pressure on the Governor to change the pending move, then what is its purpose?

Embellishurlife:
But we all have a moral obligation to make sure that our society is not "warehousing" severely brain injured children and shortening their lifespan because of the almighty dollar.

Sadly, we have to watch the almighty dollar. Do you operate your own home budget with out paying attention to where the money is going? No. Of course you don’t’. What’s going to happen when the state budget goes bust and there are no services available?

Embellishurlife:
If individuals who cannot speak for themselves cannot be spoken for by their family members and guardians, then none of us have any real rights.

I agree, but with a twist. If people can’t speak and stand up for themselves, we have a duty to speak and stand up for them.

Embellishurlife:
My child is not on the list to possibly be moved, but it doesn't change my feeling on the issue. It's a moral issue, if you don't agree with it, there is no pressure for you to do anything about it.

I’m glad your child is secure and of course it’s a moral issue. At the same time, all over the state, there are programs that the participants and those that rely on these programs, see as “moral issues”. In these tough fiscal times, everything the state spends money on has to be brought to the table and looked at. Is there a more cost effective way to get these same services? Can the families contribute as away to defray the cost? Are grants and fundraisers a feasible solution? It’s not easy or fun. Just like in our own homes, when income goes down, we look at everything we spend money on and make the appropriate changes.

Sadly, Massachusetts’ tax and spend attitude has driven us here. Remember, Governor Romney left us with a balanced budget. On Governor Patrick’s very first day, he re-instated all the cuts that Romney made. Then he added more expenses. Now, the state is billions in the hole. Yes, 200k a year is not the Big Dig, but it’s pretty pricey. One has to wonder if there is a cheaper way to get the same services.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Embellishurlife — Mon, 20 Oct 2008 19:07:08 GMT

Thank you Lynn!!!!

Have a GREAT day!

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Lynn — Mon, 20 Oct 2008 19:04:52 GMT

Embellish- I signed your petition. too. I think ALL children need to be taken care of. Good Luck~!!! Lynn

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Embellishurlife — Mon, 20 Oct 2008 19:01:01 GMT

Hi TriDog,

No, out of state voters do not have an influence on how Massachusetts spends it's tax dollars. But we all have a moral obligation to make sure that our society is not "warehousing" severely brain injured children and shortening their lifespan because of the almighty dollar. If individuals who cannot speak for themselves cannot be spoken for by their family members and guardians, then none of us have any real rights.

My child is not on the list to possibly be moved, but it doesn't change my feeling on the issue. It's a moral issue, if you don't agree with it, there is no pressure for you to do anything about it.

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

Embellishurlife — Mon, 20 Oct 2008 18:38:14 GMT

Thank you Norma!!! We REALLY appreciate your help!

Re: MOVE AN INFANT INTO A GROUP HOME?!?!???

TriDog — Mon, 20 Oct 2008 18:37:36 GMT

Embellishurlife:
No, the petition signers do not have to be registered voters in Massachusetts.

So, out of state people can have influence on how we spend our state’s tax dollars? Why should someone from Nebraska have any influence on how we spend Massachusetts money? Please don’t get me wrong, I too think these are important issues, but one should not sign a petition before knowing the facts from both sides.