Autism and Getting Help from Government Agencies

[dclark12553]

These respite workers think that you are a laundromat, movie theater, restaurant, grocery, and/or T.V. Launge. If they want to watch TV, tell them to take care of your son, or go home.

[n0x524]

God bless you for being such a great mom. Where is your wings anhalo? seriously- Jamey is so blessed. I have mild aspergers/mod. SPD/SDI and my son has pretty serious SPD/SDI and PDD=NOS and other various stuff. I am like you- a mother bear who will NOT back down when it comes to getting what my son needs. YOu guys are in my prayers.

[kgaccount]

@n0x524 Thank you. How is your son?

[n0x524]

@kgaccount we are having some issues. I had to call the police on him 2 days ago. ALL THANKS to the doc giving him a med adjustmen ant more than doubling what he has been on since it seems to have stopped working (up to 100 mg of lamictal for a 7 yr old wth...) So FINALLY after calling the doctor the morning after having to get the police to take us to the hospital whos only options were put him in theraputic foster care or a ped. psych ward over 7 hours away. SMH at the system!

[kgaccount]

@n0x524 I'm soooo sorry! How stressful for all of you. Yes, been there. I know what you are going through. You did the right thing. Re-group. Rest. Go back and get better help. Sometimes removing meds will calm down, since body may be on toxic overload. Ask doctor about this. Stay strong!

[lizariff]

I feel sorry for your son and your family...I hope things would get better with this issue. Poor Jamey...feels like wanted to give him a hug. n_n All the best to you and your family! :)

[CaitlinBrooksMusic]

Gosh, I am very sorry you had to put up with such inappropriate "nurses" and "social workers". I totally agree about the supportive comments most people left on here.

I nearly cried.

[Buffheart]

It seems to be that many people who are in charge of Jamey's health are amazed that he can't have seizures of cue...

[rqshepherd]

this is so true how goverment works for autistic people

[ascend2luv]

I empathise with your struggles, its no different in the UK. I am trying to get respite for my son. Its like Groundhog Day the merry-go-round of - ask for help - prove need for help - IF help arrives - help inadequate - empty assessments (carrot on a stick). I believe its this woefully inadequate support system that is ultimately contributing to the tragedys we read in the media.

[kgaccount]

@ascend2luv Wow. You totally get it! Seems you've been through similiar experiences. I think from a global perspective we've failed miserably to illuminate the value of caring for our most vulnerable populations. Hopefully, the more we show what is needed, the more people will understand and want to change things.

[ascend2luv]

@kgaccount - I have had my eyes opened in many ways, the system seems to be playing a game of cat and mouse, with the lives of our children. Its as if the support system itself is designed to wear you down. I sometimes wonder how I havent gone completely bonkersl. The system is so tied up in red tape its grinding to a halt. A society is judged on how it treats its weakest members ...

[LianaPalooza]

I've got a story to tell too.. I can TOTALLY relate to the experiences with respite care, and a controlling worker who nerly destroyed my family.

[kgaccount]

@LianaPalooza Tell your story on your channel!

[kgaccount]

@kgaccount OOPS, that sounded wrong. I mean I'd like to see you tell your story on your channel. It sounds interesting. There's not enough room here in comments for you to put it. People need to hear things like this, especially the funny stories about respite workers, and let's face it, we need to see the HUMOR in some of this or we;ll go nutso.

[LianaPalooza]

@kgaccount I'm writing a book. :)

[kp996]

Oh well its america it's not my problem

[akitaakita2]

Regional Center give us hours to get away and have a night out away from our son, but told us they don't anyone on their list with openings, so we have to find the person ourselves to babysit him and they will pay it. We have never used these hours.

[kgaccount]

@akitaakita2 That is so typical of Regional Center vendored agencies. The corrupt and mismanagement in these agencies can be horrific. Some of the most disgusting people infiltrate buisness opportunities where they make money off the diabled and elderly and always do the BARE BONES minimum, as if this population doesn't matter. If they were serving Madonna, they'd bend over backwards to provide the service.

[Skymaker69]

Part II: There must be other families like yours affected by this, a collective protest can work. Thats another thing- in France the Gov is trying to be careful not to upset its people, because they go out in the street to protest and go on strike, which can have huge implication to the economy. In the US, citizens are kept uniformed and in a state of irrational fear, this way they are more easily led. A classic system of oppression relies on non educating people and fear.

[kgaccount]

@Skymaker69 This is very TRUE! Half the nation marching peacefully for justice and civil rights of disabled--who represent all races and religions, etc...would be nice. It seems logical that a country like US would care for it's homeless vets, disabled and elderly..but we don't do it very well.

[Skymaker69]

Oh Oh, now you are talking! Just got an idea, but before I say it, let me clarify one thing about France/ Autism/ Street protest. It has not applied to autism (yet), because France is living in dark ages as far as autism is concerned, under heavy influence of psychology and psychiatry concepts. But thats another story.

[Skymaker69]

@kgaccount Part II Now, yes, why not a big protest? All under the same banner, for autism, scrap that non-sense politics on autism, dont we all care for the same people? Our people, autism, our children and friends, in every specific ways this might mean? A protest that goes around the world, from town to town, passing a message for autism, like the Olympic Flame? Everywhere that autism unite symbol passes comes a message to the community, mayors, councilors and presidents.

[foresam]

The agency keeps sending me people who don't know any English so they can't understand how I want them to care for my son. When I complain to HHS who oversees the agency, they tell me that's OK, they don't need to understand my instructions.

[kgaccount]

Foresam: I've had same experience. Though I speak Spanish, so I can communicate with the workers. However, I don't speak Tagalog, so when I would call my son's state run group home (the one he was in for a few years) had workers that could speak NO or very little English. Thus, I'd call. Ask about his medicine, health, behavior, etc...kind of important things, no? And these people couldnt' talk to me! One lady even dropped the phone and split, in an apparent frustration over not understanding me

[kgaccount]

Skymaker 69: So, are we to understand that "sufficient" state agencies need to be created in order to regulate our existing "insufficient" state agencies? How would that work?

[Skymaker69]

@kgaccount - well, a lot more funding in place, allocated to those in needs (based on full evaluation of needs across the board), with a lot more regulation on hiring, training and monitoring of staff (very tight, well paid), plus with good complaint procedure in place to allow the end user to protest and be heard if quality is not met. Also, surveillance of families, prevention, better quality information through education channel and media. Resources are there- need correct allocation.

[Skymaker69]

@kgaccount PART I: Can' see your comment on Tiger woods any more. Yes this is part of Americans Puritanism- the debates on adultery are missing the point of why this can happen to couples. And yes, more important debates are not raised. Our EU countries need a lot of work to improve, but situations as you have described would lead to immediate firing of the staff and if more incidents of same nature occur, court action against the agency even if governmental.

[Skymaker69]

@kgaccount

But hey, here we have legal aid to run such action. Another thing- in France the Gov is trying to be careful not to upset its people, because they go out in the street to protest and go on strike, which can have huge implication to the economy. In the US, citizens are kept uniformed and in a state of irrational fear, this way they are more easily led. A classic system of oppression relies on non educating people and fear and its pretty much the average situation you have.

[foresam]

KG, I get people from Africa and Nepal who shake their heads and say "yes" when I give them instructions. I had one who, when I asked her to slice Sam's turkey when we were out to eat, began to slice his mashed potatoes with a knife. I guess that stupidity explains why they can't learn English.

[kgaccount]

@foresam Just to clarify: I'm all for LEGAL immigrants who can communicate and do the job requirements, working with our kids. But as you and I have seen too often, government agencies often cut costs by sending unqualified, bottom of barrel employees to the disabled & elderly. It's highly unethical. A cheap shot at our most delicate population.

[AWOLFNAMEMARTI]

will repost this for you.. & hope JAMEY finally gets HEARD. he needs HELP not a hand shake.

[kgaccount]

@AWOLFNAMEMARTI AMEN awolfnamemarti I'm howling in agreement!

[Skymaker69]

Part I: I see a growing theme of anti-government views which seem to miss an important perspective: even if you are using governmental agencies, their failure to provide the assistance and quality of care you need, relate a lot more to the fact that they are not sufficiently regulated by the state than being a state agency itself. Let me say, that stronger states as seen in Europe are no prefect but would never send teams of such unqualified people as you describe.

[kgaccount]

@Skymaker69. I disagree. The theme of my videos are reality. I''m presenting facts. This is what happens. California has a LONG history of squandering money and mismanaging programs for disabled. The state DOES regulate programs. Has regulated them for years, so I don't see this new plan offering any solutions. I agree with U Europe is a bit better, mainly because European countries are smaller. USA is much bigger. We have federal and state, county, etc....it's breeds chaos.

[Skymaker69]

@kgaccount I did not mean to say you did not report true facts, only that the analysis on governmental care system lacked some perceptive. Clearly there is a problem and I don't see how moving away from a fairer, a lot more informed and correctly financed state-run care, families like yours can have the support needed. I mean the US excel in private care right? For those who can access it, that means. So, why hasn't this system met your needs until now?

[ascend2luv]

@Skymaker69 - the system is choking in red tape and administration - guidelines and health and safety regulations serve to inhibit action, risk assessments render carers incapable of caring. In UK we have CRB checks that 7 months to be returned so that a prospective carer can start a job - by this time they have moved on. Money allocated for care wasted on pointless admin.

[ascend2luv]

contd.. the care in UK is provided by private agencies who pay the lowest wages to unqualified staff, this problem is global. My sons care package was given to a private agency to fulfil. After a glossy PR presentation they were awarded a care contract despite not having an office or any carers set up to provide that care. The system is failing familes.

[ascend2luv]

contd. there are good agencies and caring carers out there - but the need to save money often reflects in the quality of care. The higher level of needs the child the less chance you have of getting care or respite. My daughter is high functioning autistic and I could get any number of carers for her because she is less complex and verbal. There's very little or none for complex autistics like my son.

[Skymaker69]

Part II: There seems to be a serious misunderstanding by many American people of what care under gov regulations means. Clearly what you have received is vastly inadequate and this is because the US system of care is inadequate, not because it tried in primitive, juvenile, and under resourced ways to provide care in a ways that tends to be described as communism. I am rediscovering US on youtube, not the US I lived in, but a frightened and uninformed one.

[kgaccount]

@Skymaker69 Well I certainly agree with you regarding a new US, "a frigtened and uniformed one" Most people can tell you everything about Sandra Bullock and Tiger Woods, but don't have a clue what our government does.