Act now! Be aware of the current state of our disability programs in California. THIS AFFECTS YOU IF YOU:

• are a person with a disability
• have a loved one with disability
• are employed or involved with helping people with disabilities
• know someone who receives joy from the programs they receive
• wish to stay informed on how you can help better the programs offered for persons with disabilities
  

Please read the following and find out just what you can do to help! 

Many of the stakeholders of this system don’t know their own history

This part I will dedicate to Betsy Katz - a parent and advocate as well as Board Member of the ARC of California. I do my best to attend every rally and hearing I can, and last year we met at a march in Sacramento and she made a poignant observation. She looked at the thousands of persons in the march and asked me – who is under represented here? Turns out it is the parents of the younger children were greatly largely not in attendance. It certainly isn’t because the parents of the younger children were not invited or don’t care – but I believe that parents when they join the disability community (more like drafted) go through a learning process as their children grow up. When their children are younger the focus tends to be on the schools and not the regional center system created by the Lanterman Act. As far as they know – this system is how things have always been and always will be. Well the fact is – the loss of the services created by the Lanterman Act will harm their children more than the older members of our community. If for instance you have a 5 year old with Down Syndrome and if we do not make some major course corrections when you get ready to look for residential programs – we could become like Texas. If you were to contact me and tell me you are moving to Baytown Texas, I would refer you to my friend and colleague – Pi-YI Mayo. What Pi-Yi would do is direct you to the local service provider where you would likely be put on a 10 waiting list. HTG.

So the first thing that we need to do is know our own history – and continue the movement. The Arc of California did a great video on the parent’s movement done by their executive director, Tony Anderson which can be viewed athttp://www.achievingindependence.tv/video/ARCCA-GSPT/ParentMovement/ParentMovement.html . The fact is that many of us are getting older – well we are all getting older – and the advocates that created this system are aging out. 

Most of our community don’t understand the scope of the threat to the Lanterman Act

Our current system was created from a movement that began over 50 years ago. When we start looking at how services for persons with developmental disabilities moved from the institutions to the community system that now is in peril, you will learn how that the Lanterman Act created a system of consumers and vendors. You will often hear advocates saying that they want to save the Lanterman Act. The Lanterman Act oddly enough is not in jeopardy.

It is the entitlement to services created under the Lanterman Act is what is in jeopardy. This entitlement was created in the landmark case, “The ARC of California v. DDS” which dealt with a budget crisis in the mid 1980’s, and the case held that the Lanterman Act created an entitlement to services. (to download go to www.arccalifornia.org/GA%20Committee/ArcVsDDS.doc  ) This case almost gives a recipe for what is likely to happen if we continue on the present course. The good news is that you can actually learn how the entitlement was created in 15 minutes by watching a segment of a video what was produced last Fall featuring Chad Carlock. To watch the video clip – go to http://www.achievingindependence.tv/video/ARCCA-GSPT/Chad%20Carlock/Chad%20Carlock.html . If you are short of time wish to go straight to the entitlement segment 20 minutes into the presentation click the section called “Sacramento Bee, Nov 1984”. ( It could take a few minutes to load on your computer – be patient)

If you watch this segment – you should clearly understand the threat. No legislator wants to be the one that killed the system – the loss of the entitlement would likely come in 2 steps. Step one – underfund the system so it can’t fulfill its missions. Step two – force the Department of Developmental Services to go to the legislature and say they did your best – there is nowhere to get further funds = amendment of Lanterman Act in conformation with the ARC of California v. DDS case eliminating the entitlement, and then we watch the collapse. The current system established by the Lanterman Act has been under great economic strain for way to long – and the problem is that as we start seeing programs like residential services fail – it will be difficult if not impossible re resurrect these programs when the economy rebounds. When the program is gone – it is gone.

Merely surviving with cuts that are less severe than first proposed could be a very shallow victory. We need to support the organizations that support our disabled community so we don’t get to step two. This is what leads us to #3.

The organizations that advocate for our community need our support more than ever before.

There is an odd phenomenon – many of the disability organizations that are fighting the hardest to preserve our system are at the same time seeing their memberships reduced. Clearly this is because of the strain the families are facing economically – but this is exactly the wrong time to drop support. We need to increase the support. For developmental disabilities – I have two primary organizations that I support, and of course there are many more. The first is the ARCs, both at the state level and at the local level. (For that matter the national level needs support also). For instance – most of the dues at the state and local level are cheap – usually $25. See http://www.thearcca.org/37.html for state membership and http://thearcca.org/3.html for the locals.  They have been very active legislatively on very few dollars with exceptional work by their lobbyist – Greg DeGiere’ and their executive director, Tony Anderson. The ARCs do an incredible job of squeezing membership dues and donations to get the most value for our community.  If you are looking for an organization that puts you dollars to work – you can’t make a better choice. They also need your support to receive their materials. One service they provide to keep our community informed is the Monday Morning Memo. See http://thearcca.org/2.html

The second group I active support is the California Disability Community Action Network at  www.CDCAN.US  . CDCAN is a non partisan network that supports the advocacy efforts of Marty Omoto. Any of us who are signed up for his action alerts get moment by moment accounts of Marty’s advocacy. To sign up for the CDCAN Alerts – go to http://www.cdcan.us/join/join_cdcan.htm  BTW – 2 alerts came over the internet as I wrote this piece.

For you professionals out there - we need to be good stakeholders and support our community financially as well as spread the word to our clients and our colleagues. From my point of view – if you profit from this population and can’t articulate what these issues are – maybe you should work with another population.

BTW – both of the organizations I mentioned are truly non partisan – this is not a democrat issue or a republican issue – this is a systems issue. Your clients are going to be deeply affected by what is happening right now and you need to educate them and motivate them if you value their quality of life.

Stephen W. Dale

Background
Congress appears to be closer to reaching an agreement about spending cuts before the August 2nd deadline to raise the debt ceiling. Entitlement spending (e.g., Social Security, Medicare and Medicaid) is at the center of these discussions. Although nothing is “off the table,” it appears that Medicaid is the major target for spending cuts. The ways in which the program would be cut are being referred to as spending caps, block grants and blended funding.
Any large cuts in Medicaid will likely result in a serious blow to, if not elimination of home and community based services. These are the services that adults with disabilities rely on to live and work in the community.

Action Needed
Press the “take action” button and contact your Senators and Representative today with the message that cutting Medicaid arbitrarily will hurt people with disabilities.

Talking Points
Medicaid is the main source of funds for people with disabilities to live and work in the community with dignity, avoiding costly, segregated and dehumanizing nursing homes or institutions.
Indiscriminate cuts to Medicaid will force people into higher cost institutional placements;

Expanding self-directed services options which allow beneficiaries and families greater control over their resources will save money and preserve important services.


If you have questions, please contact susan@ndsccenter.org.