One mom's struggle to keep her son alive in the state's care highlights the challenges of supporting the developmentally disabled

Wow.... what a sad story. I worked in a nursing home for 5 years and we also served a couple of residents whose needs were much like Drew's. I am soooo proud of the place I worked for. Adam's needs were always met, he was respected as a person and when a nurse wanted to do something that would have violated Adam's rights, we fought tooth and nail FOR him...and WON. I hope Drew finds a home where he is respected, where his rights are preserved and where he is safe and nurtured.

First let me say this situation is unacceptable on so many levels, no one should be treated like that. We as tax payers shouldn't be forced to pay for ineffectual, usless social services either. But I have to say just one thing, while I have no problem paying taxes for police services, roads, ifrastruture, etc I have to ask why should I have to pay for other peoples problems?

I dont mean to sound cold hearted, but Drew parents knew exactly the kind of care he would require for his entire life, sounds like according to the doctors he should have been even worse off - but why should I have to pay for it?

I have familly members with servere illnesses, nothing on par with what Drew has but tax payers arent paying for my heath care needs or my famillys so why are we forced to pay for his and for the thousands of other people whos famillies either can not or will not care for them.

I dont mean to sound cruel but I have my own problems, and if this familly isnt willing to help pay for my problems why should I be held responsible to pay for theirs?

Also I wonder how much the famillys religion played a role in deciding to keep Drew alive

Thank you for writing this article! As a former staff member at the ACDL I can attest to the poor quality of services provided to many of the disabled members of our community. It is sadly ironic that those who need our help the most and have the most difficulty advocating for themselves receive the least of our attention. Please keep this kind of information in the public eye...then, and only then will additional funding for housing, training of caretakers and general care of the disabled members of our community be allocated.

My response to this article is for the benefit of parents and those who are doing their best to be there for someone who's entire life will require care and attention.Get help for yourself. Find caregiver classes, even if they are not geared specifically to your loved one's challenges. Family caregivers, paid or unpaid have similiar experiences and all need to learn and teach coping strategies. Places to look include your local NAMI chapter, and your county health system. Better yet call your local Information and Referral Service, number located in the front page of the phone book.
Next,complete and file a Health Care Issue Status (DD form 148) with the
DDD Office of Compliance and Review Unit
Attn: Grievance Coordinator
1789 W. Jefferson, Site Code 791A
Po Box 6123
Phoenix AZ 85005
(602)542-0419
This may be one important step in correcting the course. If more folks would take the time to file this simple form, for each occurance if necessary things might change. A flood of OCR hearings will get attention eventually.
I too have a 28 year old son that was neglected and decieved by the system. There is a term sifting about and relevant not only to those in services, but us, their advocates. It is called "system abuse." It must stop.
If you are not a member of your local ARC chapter, than join, it's inexpensive and speaks volumns simply by our numbers. Let the governor and our representatives see our numbers swell and our path will be easier. This road is not new, many parents went before, our inertia and our disbelief must now become productive advocacy. Do something now and take care of yourself, it's a long road.

Take my advice BJ, and take your son to Minnisota or one of the states that will care for him. Arizona does not care and likely never will. Arnold vs. Sarne has been a struggle for years and little has come of it. Even if you sue, the state just thumbs it's nose at any rulings intended to improve the status of the mentally ill and developmentally disabled. I don't know if it is inhibited intellect on the part of lawmakers, stingyness or just apathy but they simply do not care! I wish you luck and applaude your efforts.

this story upset me soooo much! how could this stuff happen? this is the USA not some poor third world contry.hang in there BJ I also have a son with some problems but thank God not as many as Drew.

The problem is simple!It wasn't that many years ago Arizona ranked lower than Guam and Puerto Rico for the delivery of social services.

John's comments unfortunately, reflect a lot of peoples feelingsboth in AZ. and our country. Is this what our country is about? Should we have hungry children in the US?

Although Drew's case is a little worse than most, there are many so similar in our "systems".

The trend to close the evil institutions in this country and provide community based group homes, simply created more expensive, harder to monitor, mini-institutions.

You get what you pay for! Staff at group homes make a little above minimum wage for very hard work.

It's all about our societal concience, we don't feel enough for people in a DD system enough to do anything , let alone do what is right. Child protective services hits the front page on a regular basis, DDD incidents don't. It's not something we as citizens don't get outraged enough about. I do agree with another comment already made. If I had a child that needed DDD services, I would be in another state before sundown.

The problem is that she's trying to get care in the mongrel state of Arizona. Between the me-first-gimme-gimme Mexicans and the screw-you-I-got-mine seniors, there simply isn't anything left for decent people just trying to get by. As another poster said, get thee to Minnesota where social services are much better.

This article is about my son and my family and we appreciate the immense task this reporter had in trying to understand many complex issues and details in a bureaucracy that is opaque and in disarray, unable to cope with the many issues and problems of serving clients with disabilities as funding shrinks and the work force is inadequate in quality and numbers. To reply to the poster who said I should write a grievance/complaint right away, I can only tell all that today when I attempted to do this I was told by the DES/DDD Office of Compliance and Review today that that form is no longer in use, nor is there any other form available for complaint. Now I will write letters and seek help from anyone who is interested and seek positive changes in a failing system. There is no "safety net" and the net that is there is a complex web of fragile "support". But it has giant holes in the mesh.

My son was just denied service in a new group home this week, with "no reason given". What do you think the "reason" was? I thank the support of the New Times and these folks who have commented for support and interest. Bless you all.

I can totally relate to Drews parents. I have almost the same issues. I live in Wisconsin, and as I was reading the article, I kept saying thats what happened to us. I kept reviewing all the things in the article. What is with our government. Don't they care about our kids as adults.

Took the time to read all the comments again and was taken aback by "John". First off, Drew's parents had to stay at or below the poverty level for 18 years in order to have the Medicaid money needed to pay for the average of $100,000 year in medical expenses for years and years. No insurance would touch our family even if we could find a company that would take us on. That meant my 3 sons and us 2 parents had to forego medical care and a "normal life" all that time until my son became "a family unto himself" in Social Security terms. It doesn't matter what the expenses are in relation to the family income, only that the diagnosis be severe enough and the family had to be at poverty level. All those years that 2 college-educated professional could not work in their career fields because it would put us over-income for the medical expenses and remember, no insurance would cover anyone in the family!

Second, John, we were not members of any church at all, so your comment about our religion making a difference in deciding to help Drew live was off the mark. It was our personal values and morality and isn't that enough for a personal family decision?

Third, who would John suggest make these life and death decisions? Think about it in terms if it were your child. And as to who pays for my son's care? At first it was embarrassing to have to have the Social Security system for a baby, yet when all our family members and friends told us that none of their own money paid into the "System" would ever come back to them, then they were very glad that their money goes towards my son. So, if government money is not used for the support of those most vulnerable in society, most dependent and most unable to ever "pay their own way", then what is a government for? Oh yeah, perhaps some people would rather all their taxes and Social Security go into more bombs and weapons for the War of Terror?

It may come to a time when Americans have to see the dire results of choices made over other choices, because after all isn't all this "someone else's' problem"? When Americans are dying more and more and in public, some people will see too late that many in society have abandoned empathy for cynicism. Just how would a single parent (me) work a job that paid handsomely to cover medical, staffing, and residential needs? I could have made a career and income to support myself but instead spent 28 years struggling to make ends meet. Now I face old age with no security at all. But then I made my choice, didn't I. In the meantime, this family consisting of myself and my 3 sons is all we have to do our best to see that Drew is taken care of and survives to live each day. When I'm gone into the great Beyond, I just hope that there is government system that not only supports him, but does so in an adequate quality of life. It's looking grim out there and it will get worse.

I feel for Drew and His family,but your article only pinpointed the bad points in the any company.
I work for one of the companies you featured in your article. I can say for a fact my company goes above and beyond for their clients. My company takes their clients needs very seriously. Did you ask to speak my companies CEO? did you ever ask to speak to another caregiver? No because you were more intrested in only focusing on the negative. As I read the article I kept noticing that all you did was focus on the negative in any company.I was outraged at the bold face lies I saw in the article. You stated in the article that you can not ask Drew open ended questions because he can't answer them. You also stated that he had to be prompted.Asking someone like Drew an open ended question is like asking a 2 year old if he wants pepsi or milk. He can't answer you honestly because Drew will say anything he thinks you want to hear.

Dear Velvet,

Obviously you have never met my brother. Thus, I don't know why you think you can make generalizations about him. But if you had, in answer to your CLOSED-ended question, he would like a Diet Pepsi in the biggest mug you have filled to the brim with ice cubes. And that would be what he honestly would want. So with that being said. What other bold face lies are you talking about?

Also, there is no room in an article (with the purpose of pointing out the problems with Arizona's systems) for what's good. Believe me, what was pointed out in the article only touches the tip of the iceberg. But if the company you work for is so great, why don't you say it's name?

Now to John's comment,

Is there a religion out there that says if your child is born with a defect that you should kill the child or just let it die? Is there a religion out there that says a mother should not love her son if he comes out less than perfect? I found your question at the end appalling and it only goes to show how easy it is for some people to look at people like my brother as less than human.

Ugh...a thunderstorm is NOT a monsoon.

Dear John,
The Company I work for is not the issue here,the issue here is your brother and his health and safety.
You stated in the article that you dropped your brother off to a staff that answered the door in what you called a cloud of marijuana smoke, if at that time, you felt your brother was not safe then WHY did you leave him there?? Do you want to know why there was No investigation into that incident? Because you and your mother left him there overnight! If I felt for one minute my child was not safe some place even if it was a twinge of doubt I would never have left my child there.
Next your mother stated that one of the homes your brother was in was "pure hell on Earth" if your mother felt this way then once again why did she leave her mentally challenged son there? Your mother stated she was attacked in this home by another client. If she was so worried about Drew then once again WHY did she leave him there for 4 days?
Your mother's story is so packed with out right lies that it makes me laugh. If you and your family are SO worried about Drew's safety in Arizona group homes then maybe you should look into other options, such as moving him with you and your family.
I don't think the problems are with the group homes and the staff I think the problems lie with you and your family, nothing will ever be good enough for your family where Drew is concerned. There are agencies out there that will help pay for Drew to stay at home where he will be " properly cared for" as far as your mother in concerned.
I have dealt with people like your mother and NOTHING is ever good enough for them.
Question?? Did you and your family get the sympathy you people were looking for since this article was written?

BJ and family, I stumbled across your story and read it with interest, since I have two nephews who at some point in the future will require assisted living arrangements. Please don't let the comments of those like "John" and "Velvet" discourage you. Any decisions you made, whether on the spur of the moment or after much thought, were what you thought was best at the time. No one can know what life has been like for you and no one has the right to condemn you. You do not comment, and probably wisely given the response you would receive, on your faith/religion/spiritual life and it's influence on your decision to pursue medical intervention for Drew as a newborn. I am a speech therapist with an Early Intervention program and a born-again Christian, and believe quite firmly that you made a very courageous, loving, and God-honoring choice and He is pleased with you. I pray that you find a safe, healthy place for Drew very soon. If you decide, as one writer suggested, to leave Arizona, come to Wisconsin!!. Yes, it's colder here, but only with regard to the climate; the people here are warm.

As an educator, and parent, I believeit is our responsibility to prepare our children to be "productive" members of society. EVERYONE has something to give. How is it then when our children, who might need a little assistance, don't get it? Drew's family clearly has paid, and is paying, into a system we all pay into as Americans. And in this case, they have a right to advocate for Drew to see to it he gets what he has a right to. I see that as some pretty simple things: clean bed, privacy, healthy food, access to his medications and a safe, valued environment. Heck, we provide it to many of the illegals here in our country who don't pay into the system. No doubt BJ and her sons would provide these things for Drew, if that was what Drew wanted, but Drew is 28 and he no doubt wants to gain the independency we have prepared him for as an adult. It is our moral responsibility, as Americans, to give him the opportunity to teach us a thing or two about ourselves and what we value. After all, if we can afford the lives of over 4,000 Americans and billions of dollars on a war we can't win, surely we can give this young man the simple things he needs, including our support.

I am appalled at the ignorance of people like John. It would only take a fall or an accident to cause any one of us to become cognitively disabled. I have been working with people like Drew for 16 years and I have worked in 4 different agencies. I have worked with some that fell off of a porch and some that have been in car accidents and have been disabled and living in group homes since their accidents. So the real question is to ask yourself if it happened to you how would you like to live and who do you think would pay to make sure your wants and needs are met? I am sure you wouldn't want your family to have to endure what Drew's has just to get a placement for him. John, wake up and smell the coffee. We need to take care of those that cannot take care of themselves. When you get older and get medicare who do you think will be paying for that? BJ if I could help you with placing your son I would but I don't have the facilities or the money to be able to do it. You and your family will be in our prayers. Hope you find a vendor willing to take Drew in and take care of him the way he should be.

Have you tried getting a new Support Coordinator? Or requesting their supervisors help? What about fighting the state to pay you to be his caretaker instead of wasting their money on ADH/group homes that can't handle his needs. You know how to take care of your son better then anyone. What a great concept - help the family before it is broken. Not after. Im sure it would be a battle. Just a suggestion. Good luck to you and your family.