In 2007 - 2008, PAD-CO conducted a "retaliation survey" to which a number of parents anonymously replied.
Below are the written comments from this survey. So, have things changed? Is retaliation or the threat of retaliation less of a problem now as compared to the reports in 2007-2008? Are these statements still valid? Should we do another retaliation survey?
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These are the written Comments from a Retaliation Survey completed by PAD-CO in 2007 - 2008:

Question:

You might be interested in the written Comments from a Retaliation Survey completed by PAD-CO in 2007 - 2008:

 

Question:

9. Please tell us about your fear of retalition. Why do you have this fear? Does it stop you from complaining or taking action in any way?

 1.  retaliation is present everywhere in society even those doing it deny it exists      

2. I am my childs cna and I am always in fear of this being taken away if I complain too much. It is the only way I can earn anything to help my husband with our finances. We are also concerned with all of this new sis info comming out that we will have a huge cut in services. I would join in on a group who wants to make their voices heard, safety in numbers.   

3. I fear retaliation because the [Metro area CCB], since it operates as a "non-profit", is not subject to any oversight by the State. There is no way to report anyone from the [Metro area CCB] for review. They are often slow in providing answers or provide wrong answers and then retaliate against consumers when consumers call the State. I try not to complain but have in the past.     

4. The [Colorado] School district special education director has discharged competant professionals for what appears pretextual reasons. There seems to be more spite in her management style than logic. When you call special ed. dept. they answer special education and legal. The district has hired a full time attorney for special education issues. The district has made clear they will litigate parent claims for quality education. This type of climate does not support collaboration and puts parents on defensive immediately.     

5. Whenever I question the services or why they won't provide what is requested, my son's case manager gets in trouble as does the provider. The administration seems so intolerant of a parent questioning their decisions or lack of services and they blame the case manager or provider. The reality is it is not their fault it is the administration that makes the final decision.   

6. Fear is just human nature & with the way these systems are set up my daughter has no options because Colorado medicaid is horrific. Hell, half the time it takes weeks to even find out who is in charge to complain to. [It was even stated to me] "You better quit biting the hand that feeds you."    

7. I've had the experience of asking for more SLS funding for my adult child and getting a response that left me feeling that calling attention has prolonged the stay on the waiing list for comprehensive services.   

8. Re-read the earlier text. It was as clear as I can make it.      

9. My fear of retaliation is due to the fact that my child is non-verbal and could not report any abuse or neglect she encountered by the school or the agencies. The only way we would be aware of retaliation would be if someone from the agency/school made a report or our child came home with bruises or bleeding.   

10.    I'm afraid my child will be taken off of the family support services if I say something in my work that reflects negatively on the CCB. It's like they are keeping score and if you get too many tick marks against you, then all of a sudden the "funding" has been cut and they are no longer "able" to serve you. Trouble is they don't stop to think that parents talk to each other and so you know your kids money went to someone else who will kiss up to them and say glowing things until they get screwed and then they lose funding too.     

11.    I fear a "shutdown" in communitcation and an attitude of doing only what they are required to do...no going above and beyond.    

12.    I do not have fear of retaliation, I have fact of retaliation. It does not stop me from doing my job and advocating for individuals in services including my son. However, the fact that they targeted my son and breached confidentiality resulted in no more than a letter from the Division that the conversation at the meeting was inappropriate.   

13.    Each year the CCB sends out an "anonymous" survey supposedly checking on the adequacy of services. However, the survey goes right back to the CCB, and the questions, in my case, totally identify who is completing the survey. 

I never answer these questions negatively because of worries that my child may have retaliation if I do. 

So, the survey, in my case, never accomplishes its purposes.     

14.    I am trying to choice to another disctrict. I am worried that if they know I have a complaint in they wont take my son.      

15.    I hsve this fear because after being in the system for 15 years, I know that if I persue what my daughter needs, and the school can't/won't provide it, then the staff won't be as nice to her; they'll start to put her in the middle of the disagreement; the bonding falls apart; and no one benefits in the long run. 

It certainly keeps me from acting upon some needs. I try very hard to compliment, acknowledge, and respect all of the team players. If I persued issues counter to what the district 'offers', then I'm the trouble maker and hopes of getting anything is severely diminished.      

16.    I was worried that if I reported a problem with a teacher my child would be treated worse. I should have taken it up the chain of command but worried what would happen to my child if nothing was done?     

17.    When I am talking about the services my child recieves, or lack of services, and ask people about it, ie teachers, transition team, other parents, I am told to be very careful about complaining, who to talk to, etc. This CCB has been apparently known for retaliation to professionals and parents. It does stop me from complaining and taking action. I don't want my child to suffer because I opened my mouth.      

18.    Nothing worse can happen to you than to see first hand the power that can be applied by the director's of CCB's unchecked by the state. I have been prsonnally arrested and charged with trespass by a CCB director as a result of my activism. In the past when I was much younger and radical I never failed to take action, regardless of the fear tactics employed by CCB directors. Today, now that I am older I am totally frustrated by the inability to affect change, paticularly in promoting self-determination. Fear of retaliation has never been an issue with me despite my ordeals, but has been an effective rallying cry for activism.     

19.    It happens so the fear is real   

20.    It definitely stops us from standing up for what we believe should be happening for our children. I have no doubt about that. During school years we were afraid that if we "made the teachers mad" they would take it out somehow on our daughter. Now that she's an adult, we sometimes see more pressure put upon her to "perform appropriately" because we have been active advocates for her.   

21.    My fear is based on reality, and NO it does not stop me from taking action because I have history (MLK,Vietnam and Indian ancestory) and knowledge to tell me the only way to make change happen is to keep chipping away at a problem.      

22.    Yes because the squeky wheel does not always get the grease, I have fears that if we complain or take action we will lose what little services we have. That people will not return phone calls or avoid answering questions if we become bothersome     

23.    I am always aware that what I say and to whom I say it may cause negative consequences for my chil with a disability. This has been true throughout his schooling and especially in the adult CCB delivery system.

Supervisors and others do not like people with suggestions and ideas.

     24.    YES! retaliation is rampant within the system, the two cases that I have shared are indicative and these are only a couple, I know of many individuals who have been retaliated against by providers and the system. It does stop consumers and families from filing complaints because it causes harm to the recepient.     

25.    No. I am too old and value my children too much to stay quiet, but my children (who are adopted and all have had multiple foster homes and very bad experiences) have had to learn to have a thick skin. Social Services will not enforce complaints against the school and the school says they "have to report all incidents" even if they are false. It is a cozy system for both of them.    

26.    it will not stop me