The answer is: When the Governor’s budget proposed slashing $750 million from community-based services for persons with developmental disabilities.

The Lanterman Act was put in place through a partnership between family members and legislators (and Governor Reagan) over 40 years ago.  If we do not act collectively with a strong voice, this promise in law to Californians with developmental disabilities and their families will disappear and never return!

Please read, download, and circulate the accompanying information bulletin about Governor Brown’s 2011 budget proposal.  Then notify your legislator as directed. If you need to know the address and/or phone number of your local representative, go to www.leginfo.ca.gov.

The hearings on the state budget will be short and will happen very soon.  Please keep in contact with this site and others with similar concerns for the latest on this urgent issue.

Click here to download Information Bulletin

Muchas personas que hablan espanol, que son familiares de personas con descapacidades de desarrollo, nos han pedido copias de la encuesta en espanol. Gracias a un padre de mucha bondad y generosidad, Alejandra Rivera, quien ha traducido la encuesta que hemos puesto en la internet.  Cuando tenemos una cantidad grande de respuestas, vamos a publicar los resultatados en ingles y en espanol.  Para empezar, unicamente hay que hacer “clik” en esta link:

http://www.surveymonkey.com/s/F5NS9JK

We believe they do in one key way.   The Tea Party may be about different things to different people but one common thread is a feeling of exclusion from the decision-making process and from having any collective power.   They claim that Wall Street and Washington are out of touch with Main Street.

Our observations and data collection tell us this is a unifying theme of family members in California.   They feel distanced from Sacramento and believe they have no collective way to express their views or register their concerns.

Over 700 family members statewide have completed our latest survey and results so far paint a picture similar to the one expressed by the Assembly Committee on Accountability and Administrative Review over a year ago.   We have a service system that lacks oversight and transparency and is often autocratic.

KTLP.org will provide an analysis of this survey in the days ahead and perhaps can play a role in leveling the playing field in the near future.

If you haven’t yet taken this survey, please go here:  http://www.surveymonkey.com/s/LD8P7DW

Since the 3^rd of November, almost 600 people have completed the KTLP.org survey.  If you haven’t taken it, please consider giving us this feedback whether your experiences have been generally good or not so good.

We believe three things:  1) family members of individuals with developmental disabilities are under-informed on policies and decisions in Sacramento that directly affect them;  2) education on the rules and laws affecting their family members’ lives is needed, and 3) we are not well connected to exchange information and learn from each other.

KTLP.org wants to change these things and help family members play a more important role in shaping the direction of the service system in these challenging times.

In the near future, we will publish the results of this survey on our site and share them with legislators and other interested parties that care about our opinions and consider them important, and with those that are convinced that it is in their best interest to listen to us.

Here’s what we can say about the survey right now:  The demographics show that half of those responding receive (or received) Respite Services, one-third have children of school age, and over 90% of the zip codes of those completing the survey are different.  This tells us that family members from everywhere in California are finding us.

Click here to go to this survey: http://www.surveymonkey.com/s/LD8P7DW

Please send this link to other family members and friends of people with developmental disabilities.

The archived video of the entire hearing can be found at www.calchannel.com.

During the three hour session, much was said but we remember best the words of three people:  State Senator Bill Emmerson, representing the Inland Empire, Barbara Maizie, representing The Arc of California, and family member Therese Kragness, representing KTLP.

1. State Senator Emmerson – His district is in the Inland Empire and his line of questioning indicated he had done his homework.  He asked Inland Regional Center’s Executive Director, Carol Fitzgibbons, some pointed questions about their new and old headquarters buildings and other issues that have come under scrutiny before and after the audit report was released

2. Barbara Maizie – She spoke on behalf of The Arc of California.  Her time was limited but she made a number of important points that can be found in greater detail in her written report at  http://www.assembly.ca.gov/acs/newcomframeset.asp?committee=13 (When you get to this site, click “Joint Oversight Hearings”)

Here is an excerpt from her report:

“Not all regional centers are the same, just as not all service providers and not all families are the same. And the impact each regional center has on its community depends very much (far too much, actually) on the personalities of the top management staff at any given time.  My personal belief is that on the whole, the majority of people and providers find a way to work cooperatively with their regional center.  But it is important for the committee members to know that there are many family members and service providers who feel they cannot speak up for themselves because of the power their regional center has to do harm to them.  Sadly I must tell you that there are many people who feel this way, to a greater or lesser degree, in every regional center area.  The need for improvements is very real, and people all over California are hoping that this hearing will be the first step in a process that will lead to meaningful change.”

3.   Therese Kragness – She is a family member who spoke during public input near the end.  She reminded the legislators that this day (November 4) was Frank Lanterman’s birthday.  She said  that many parents believe there are serious problems with regional centers and with the Individual Program Planning Process.  She thanked the legislators for listening to parents and, shedding tears of gratitude, presented an award to Assemblymember De La Torre.  This rosewood clock plaque reads as follows:

Click on plaque to enlarge.

Help us link people to our online family member survey.  We have almost 500 responses.  Give family members you know an opportunity to respond.  Copy and paste the link in an e-mail:

http://www.surveymonkey.com/s/LD8P7DW

What do you think the legislature should do to help regional centers provide services and supports that are more responsive to the needs of people with developmental disabilities and families? (Reply below)

In a few short days, we have received over 200 responses to this survey through social networking.  Our network is small and unaffiliated with any group but it is growing.  We believe this survey is the first one attempted in California by RC family members to reach out to other family members and ask their opinions about this important area of their lives.   These family members volunteer their time and talent to the virtual community at www.KTLP.org.

Take the survey here and then follow us here and at the website if you believe people with developmental disabilities and their families need a greater voice in what goes on in your region and in Sacramento.    Four words describe what we want to do through this online community:  Inform, Educate, Connect and Inspire.   Be patient with us (we are volunteers) as we build these ideas into our site.

Frank D. Lanterman

Maybe this hearing (or where it can lead despite anything said in the hearing) will represent the birth of a new era of accountability, transparency, better oversight, and greater dignity and respect for our family members.

A telecast of the joint hearing of the Human Services Committee will air on CalChannel.com.  It begins at 9:30 AM.

Tomorrow, November 4, is the joint Human Services Committee hearing of the audit report of the regional centers.  It was commissioned by the Assembly Committee on Accountability and Administrative Review and the chair of that committee is Assembly Member De La Torre.  More than any single person we can think of, he is responsible for passing legislation that allowed the audit to go forward.  His committee made recommendations on the problems of whistle blowing protection, retaliation and favoritism after considerable research and a public hearing.

At a small parent meeting recently, in Rancho Cucamonga, a group of parents used a Flip camcorder to express their gratitude for his heroic efforts.  Some of the clips were filmed at night and are dark, but the message is clear.

Please continue to help by giving the link to our survey to your network of families and friends with loved ones with intellectual disabilities.

http://www.surveymonkey.com/s/LD8P7DW

Since we posted our survey at the end of the business day on Tuesday (it is now Wednesday morning) and directed people to it, we have had a steady flow of family members and friends wanting to give us their anonymous thoughts on regional centers and the IPP Process.   Frankly, we can’t believe the response given that our network is still small, although growing every day.

There is still time for others to join us and make their voices heard, and pass the link to this survey to others.    The Department of Developmental Services and the Association of Regional Center Agencies will tell us things aren’t so bad, all things considered, and we will have your collective voices, perhaps, to say something a bit different.

The relevance of people with intellectual disabilities, their family members and friends, to this or any political process, depends on our diversity – for instance, how many zip codes are represented in our survey results, and other demographics – and our numbers.

[Here is the link to the survey]

You may ask why we have included a few questions about your family member’s Individual Program Plan (IPP) since that was not discussed in the audit report on the regional centers.    It is probably a stretch to believe that any audit done by the California Bureau of State Audits would ever include detail on the IPP Process because it addresses the behavior and actions between a non-profit agency and an individual or a family.   Scrutiny of this sort is a legitimate oversight function of the Department of Developmental Services but, by default, is often left to other agencies like Disability Rights California (DRC) or the Area Board.  Such is the case in at least one “catchment” area where negotiations between a regional center and one of these agencies is underway in an effort to avoid a Class Action lawsuit.  We’re hopeful that what happens with this “settlement” arrangement will become operative in other areas throughout the state, wherever it is needed.

Obviously, it shouldn’t come to this point.  However, our belief is that surveys like this one contribute to greater transparency.  If a family realizes that they are not alone; if a small parent group that bands together understands that other parent groups are discussing the same issues;  if groups within a regional center service area realize that the IPP Contract is not working in some substantial way – this is not only information that deserves our attention – it demands action.

Next Post:  Join our delegation in Sacramento on Thursday.