Lanterman Families Seek Moratorium of Closure - Cite Problems at Senate Hearing

Many Lanterman families testified at the Senate Gearing on Oct. 23, 2012, to problems with the Lanterman closure including placement of Lanterman residents in homes that were unprepared - the death of one consumer was cited as related to this issue. Also, promises of Lanterman staff being kept on as state employees has not been finalized resulting in many staff leaving Lanterman for other jobs.

After hearing their testimony I choose to add my voice to theirs in seeking a moratorium to the closure process until issues can be addressed. Please review the moratorium document and add your voice in support if you agree with their requests.

To join with Lanterman families you simply email either Steve Johnson at stejohns@ureach.com or Jerra Letrich at jletrich@sbcglobal.net to add your voice to theirs. I believe it is important to stand with families who seek only to advocate on behalf of those they love.

Kathleen Miller, PHA President 

Lanterman Moratorium Letter
October 23, 2012

To Joint Senate Committee Hearing Members,

Families and advocates of residents at Lanterman Developmental Center (LDC) write to you in desperation, requesting your intervention in the closure process of Lanterman Developmental Center (LDC). Our confidence continues to erode that the Department of Developmental Services (DDS) will deliver on commitments made nearly three years ago when they announced the closing of the Center, documented in the LDC Closure Plan which was approved by the California Legislature.

Two years of meetings between the DDS and representatives of LDC families to effectively address the health and safety concerns of movers as well as residents who continue to reside at LDC have failed. We are writing because many families have lost confidence in the often frustrating negotiations with the Department, and, as a last resort, turn to our elected officials for resolution. Just a few of the problems brought repeatedly to the DDS which have not been adequately addressed are:

• Unrepresented LDC clients being moved into community homes which do not meet the high standards set in the LDC closure plan. Movers have experienced declining health and hospitalization. A number have died; one merely three weeks after being transitioned. 
• The community state staff program (CSS) has not been implemented, even as 140 LDC residents were moved to community placements, and even after DDS called the CSS program a critical part of the success of the Agnews’ closure. Failed placements out of LDC are likely a result of novice community caregivers unfamiliar with the needs of this very fragile population. DDS claims they are powerless to implement the CSS program, yet it is unclear why.
• No data has been provided by the Department on the outcomes of the initial 140 movers. A handful of success stories offered by the regional centers are not statistically relevant. DDS and the regional centers must be tracking the transition data of every placement to date. When will they provide this information to reassure families and legislators that placements are happening successfully, and that deaths are being fully investigated?
• The quality of services at Lanterman is declining, violating the guarantees of the Lanterman Act. Experienced, well trained staff are departing, through attrition and layoffs. Staff morale is in decline and resident consolidations result in unfamiliar staff caring for clients. Therapeutic and recreational staff, as well as chaplains, are leaving, further reducing the quality of life for the residents who live day to day in a world of uncertainty.
• Regional Center employees tell families the new care home models are still under development. Some will not be available for a year or more. Meanwhile, services at LDC are being cut back or discontinued; the Rustic Camp recreation area, the church services, and the Café.
• Hopeful families attended a meeting at LDC on Saturday, October 13, 2012, to again raise these issues with DDS Director Delgadillo. While there were hours of discussion, no suitable solutions were offered to alleviate families’ concerns.

After two years of negotiations with DDS, families have no choice but to take further action. The lives of the most fragile and behaviorally challenged clients are at stake. As conditions at LDC further deteriorate and promised community options fail to materialize, we must act. We call for a moratorium* on placements out of LDC until:

1. The community state staff program is fully implemented, and providers have hired employees from LDC to provide direct care in the homes.
2. Data is made public demonstrating outcomes of every LDC mover to date, commencing from January 1, 2010.
3. Assurances are provided, in writing, that downsizing at LDC will be suspended until community services development has been completed.
4. Programs at LDC will not be downsized or eliminated until all clients have been transitioned.
5. Family rights, documented in the DDS Individual Program Plan manual, will be respected during the planning team process, and families will not be pressured to accept placements that are not equal or better than what their loved one currently receives at LDC.

*While we call for a moratorium on placements, we support families who wish to proceed with their child’s transition. Our request is for a moratorium on placements of unrepresented clients or those whose families wish to wait until a satisfactory community option is available.

Two years of unproductive negotiations, empty promises and broken commitments are enough. Families and advocates of Lanterman residents plead with legislators to call for a moratorium on placements out of Lanterman Developmental Center, until all health and safety concerns have been addressed.

Respectfully,
Lanterman Families

PHA President testifies at Senate Hearing on Sonoma Developmental Center

Kathleen Miller, PHA President, testified at the Senate hearing on developmental centers on Tuesday, October 23rd, in Sacramento. Below is her statement to legislators.

I have been asked to give the perspective of the families and friends of Sonoma Developmental Center residents on recent events at SDC, including the current licensing survey. First though, I need to give a brief background about the majority of SDC families. We, as family members of developmental center residents, frequently hear that we dropped our children off at birth at and never looked back. We hear that we fear alternative placements because we don’t know what is available outside the centers. The truth is that most residents have involved families and many residents have had experiences with private placements outside the centers. Families continue to choose the centers for their loved ones because they remain convinced that is the best, safest, place for them. The day I see a better alternative for my son, a resident of SDC, is the day I start packing his bag. This is why it is so difficult to hear the latest in a long series of myths about developmental center families-that we are so eager to keep the centers open, we are willing to overlook abuse that occurs within them.

Nothing could be further from the truth. We have learned, often from years of negative phone calls, to dread bad news and no news is more hurtful than hearing your loved one has been the victim of abuse. But we do not believe that private placements outside the center offer any greater protection or safety, and we know that often it is far worse. We join with everyone here in wanting to explore ways that will help with prevention of incidents of abuse both inside and outside the centers.


I have been asked to give the family perspective on how such abuse can be reduced, or avoided at SDC and by extension, the other developmental centers. 
Sonoma has two populations: medically fragile nursing residents and behavioral residents. Licensing has been looking in depth at behavioral residents the incidents cited have taken place on maybe two or three units within those programs. They have not occurred on the nursing side. It is important to note that the residents involved have serious behaviors and would be challenging and expensive to serve in any setting.


The first step in preventing or addressing issues of abuse is to make sure that it is easy, and not punitive, for staff to report potential abuse if they see something suspicious. The reporting process needs to be clear and streamlined. We have been assured that this has been addressed and are happy to hear this. It is mainly line of care staff who in a position to notice and report and they are the most busy dealing with residents. The process must be clear and simple for them-not just the administration.


Next is the issue of staffing. I have written repeatedly about how line of care staffing levels have sunk to dangerous levels and how staff are repeatedly held over to work double shifts on the units. The good news is that after years of hiring freezes SDC is now in the process of hiring. Families are relieved to hear this. One issue that remains unaddressed, However, is the reduction and elimination of programs and opportunities for behavioral residents to engage with others, work, be challenged, and have new experiences, including access to the greater Sonoma community. As program after program has been reduced or eliminated the world of the behavioral residents has shrunk, and boredom has become the new normal. Unfortunately, when our behavior residents are bored they can come up with behaviors to deal with that. There is a reason licensing continues to cite active treatment as a condition that is out of compliance. Consider the scene on these behavior units: Short staff and tired, overworked staff, few activities, bored behavior residents. It can be a recipe for abuse. Thus, families want the issues of staffing and programming addressed.


A related issue is the lack of willingness by some in administrative positions to continue to provide varied and new work and leisure experiences for Sonoma residents. I know you are all thinking that this is just another money issue, yet another plea for more funds. It is not. There are many opportunities already available on SDC grounds to provide this work variety, there are vans to take residents on community outings, there are creative ways to have residents help on the farm, bring in volunteers, stretch the world for SDC residents, but ideas are too often discouraged or abandoned. I feel there has been a slow but steady decline in the willingness to take on new ideas and challenges. There are too many reasons why things can’t happen and too little support to assure that they do. This all ties in directly to the active treatment issues cited by licensing and the boredom that leads to escalated behavior problems and potential for abuse. The message from the top must be one of openness, engagement and support for those who are trying to enrich the lives of the residents at SDC every day in every way. These attributes made SDC a fruitful and thriving community. The families want that back.


The last issue families are focused on is the persistent lack of communication and inclusion at SDC. I admit that I have not done enough to seek out regular meetings with the SDC administration and they in turn have chosen to communicate only at the regular PHA meetings, rather than one on one. I believe there is room for improvement. Communication to and inclusion of families is a serious issue. All too often significant changes impacting the residents are simply announced to families as final decisions, not arrived at as part of the team process involving families. At times changes have happened without any notice to the family/conservator. Let me be clear-this is against SDC policy and it is against the law. Further, it is impossible for us as family members to protect and advocate when we are not informed. We are part of the team and must be included in the decision-making process. We are the front line in advocacy and prevention of abuse. We need to be included and to have full and regular disclosure in order to best exercise our role as responsible advocates.


Finally, families need access to and regular communication with you. You need to hear from us and we need to hear from you. I feel a regular bi-monthly communication would help us all to track the concerns of DD population both inside and outside the centers. We all need to work together and communication is the key first step.

It's Time to Renew Your PHA Membership

It's that time of year when the Parent Hospital Association members are reminded to renew their membership -- and new members are encouraged to join.

YOUR MEMBERSHIP IS IMPORTANT!

• The size of an organization is measured by the number of members.
• A large organization has more clout when delegates meet with legislators in Sacramento and Washington, DC.

So, it’s important that you renew your membership and send in your dues now. Encourage all your family members to renew their membership also as this will increase the number of members; encourage relatives and friends to become members of PHA as well. All of this will help to increase our membership, which is so important at this time, and strengthens our influence when we advocate for our developmentally disabled loved ones with legislators. 

PHA assists family members who request help with IPP meetings and with those needing help obtaining conservatorships of their loved ones.  Please join us for 2013. 

Beverly Austin

If you received a copy of the latest Gazette, you will have found a membership form on page 4. Those forms should be returned to Bev Austin, 2683 17th Avenue, San Francisco, CA 94116.

The Dismantling of Sonoma Developmental Center

The following message from PHA President Kathleen Miller is also included in the latest edition of The Eldridge Gazette. You can access a copy of the Sept/Oct 2012 Gazette by visiting the Resources page of this blog and downloading a copy (pdf). Back copies of The Eldridge Gazette are also available.

It has been over ten years since my son first became a resident of Sonoma Developmental Center. In fact it was over ten years ago that I first became a social worker for the center. While ten years is a considerable length of time there are those of you who have been involved with the center for much longer.  In those ten years I have seen many changes come to Sonoma Developmental Center. I am certain that you all have seen them as well. I want to talk here about those changes and what they mean for those who live there.

THE POPULATION - We are all aware that the population has and continues to shrink. Some of this is due to the aging of the residents. Sadly deaths do occur, particularly among the medically fragile many of whom have lived well beyond their life expectancies.

However, it is also due to policies that put pressure on regional centers to place residents into board and care homes outside the center. Recently the Department of Developmental Services sponsored a trailer bill that prevents any admissions to Sonoma Developmental Center for any reason! Pressure to place outside the center continues. I get calls from families all the time, some with family living inside Sonoma who are being pressured to place their family member in a board and care and some outside Sonoma where the placement is not working seeking a way into Sonoma. I am forced to let them know that there is no way in.

UNIT CLOSURES – The number of unit staff is based on the number of residents so as the population declines it becomes necessary to close units in order to staff those units remaining. Since transfer trauma is real, closures do mean an increased risk to residents. Most residents are able to adapt, but for an unlucky few this has not been the case. For fragile Sonoma residents, moving to a new environment can mean escalating behaviors, increased medical issues, and in a few rare but very real cases, death.

PROGRAMS – I have seen programs shrink or be eliminated altogether. When the Sunrise worksite in the community was shut down families received assurances that there would be efforts to take the Sonoma residents who worked there out into the community for regular outings. This could make up for the closure of the community worksite where trips to restaurants, to the bank to cash their earnings and spend them, and training on how to access public transportation, were part of the daily fare.

But worksite trips to the community have not taken place as promised.  In truth classes and groups have been cut and programs and positions have been eliminated. Opportunities that were available for former residents to make camping trips or outings to camp via, have summer swim parties, work in the community, have water therapy, participate in the MOVE program and on and on no longer happen. As the programs are eliminated the world of Sonoma’s residents shrinks along with them.

STAFFING – We have only to visit our family members on the weekend to be aware of staffing shortages. If we come at shift change we are likely to interrupt staff calling around to see if anyone wants to take the next shift so they won’t be held over and miss… We may be seeing new staff who have floated from another unit and are unfamiliar with and have no relationship with our family member. We may be told the community outing did not go forward because there was not enough staff to make it happen. We are not usually told if the minimums on your family members unit have decreased meaning there is one less staff working with the same number of residents. 

Staffing issues at Sonoma have become a chronic issue. I am so delighted that at last we are hiring some new staff. I hope it is enough to restore some of the former vitality to the units.

WHAT YOU SHOULD KNOW – I am a broken record in saying that

1. You should know what your family member/conservatee does every day. If you know their program you will also know when a change occurs. Remember you are an important member of the team.
2. You should also know that policy states that you need to be informed of any change in service and that if you are not happy about the change you can file for a fair hearing.
3. You should know that applying for a fair hearing, while not always a solution, is the only and best way for you to stand up for your conservatee/family member if you disagree with a change, and you should know that the process is simple. You also need to know that PHA stands ready to help if you decide to take that step.
4. Often you will do better for your family member if you work in cooperation with the team. Remember that most staff want to do what is best for residents and may be willing to work with you in finding a way around program cuts.

All this adds up to long-standing policies and practices that have taken a toll on the care that our loved ones receive at Sonoma. Make no mistake however, the medical team continues to be top notch, the large majority of staff treat the residents with care and respect, and each resident does receive some daily programing. The team approach that has been the backbone of Sonoma still exists and the oversight is still unmatched. These are some of the reasons that families remain committed to having their family members remain at Sonoma. However, the changes cannot be ignored either. Your continued involvement is key to your loved one receiving the services needed to sustain him or her with a positive quality of life!

Kathleen Miller, PHA President
kjmillerkoch [at] yahoo [dot] com

Developmental Center Hearing Scheduled for Oct. 23rd in Sacramento

There is a hearing on developmental centers on the October, 23, 2012, in Sacramento. The hearing is dealing with the licensing survey and the recent language forbidding all admissions to Sonoma Developmental Center. It begins at 10 a.m., and public comment is allowed.

Licensing has been looking at Sonoma with an extended visit. This hearing would be a good opportunity to let legislators know that while you support oversight you still believe Sonoma is the best, or only, place for family member.

PHA President Kathleen Miller will be in Sacramento on the 23rd to welcome any members who can join with PHA in representing SDC residents. If you can not attend, you can also contact Kathleen with any questions or concerns that you would like her to pass on.

email Kathleen Miller at kjmillerkoch [at] yahoo [dot] com