Informing Families Building Trust – Clarifying Community

I received my newsletter today from the Washington State Informing Families Building Trust and again, choice is being taken away but we are told we are given more choice.  I wonder about the marketing strategies used which get people to believe things that are clearly untrue and to support ideas which are harmful to the group as a whole.  The strategies used are powerful and difficult to undo.

I often wonder if the people involved in selling these programs really and honestly believe what they are saying.  Have they been out in the streets, have they experienced the life of parents struggling to survive and keep their children and adult children safe and healthy, have they experienced success in settings which may not fall under their narrow definition of “community?”

The new definition of an integrated setting comes, in part, as a response to states and other stakeholders who are interested in using HCBS waivers in segregated community-based settings. According to the Centers for Medicaid and Medicare (CMS), “These settings often do not allow individuals to choose whether or with whom they share a room; limit individuals’ freedom of choice on daily living experiences such as meals, visitors, activities; and limit individuals’ opportunities to pursue community activities.”

As one who has experienced success in what would be described as a “segregated setting” (although it is so far from what segregated means in reality) – my son has so much choice about his daily activities, food, opportunities to pursue community activities, his visitors, a private room which he can decorate as he wants, and lives in a a whole community who knows him and with people with whom he connects.

I know for a fact that he would not have this freedom and choice if he lived in what CMS would describe as “community.”  The “community” they describe would be a prison cell for my son and people with similar support needs.  Their “community” would mean that he would sit in a house with roommates who were assigned there, with staff who may not know him.  The staff would turn over rapidly since the wages are low and there is very little support.  If my son wanted to go out, it would be dependent on if the staff person had a car (how would I even know if their car was safe?) and was able to drive.  It would also depend on if there was enough staff to stay with the other roommate(s) so that a staff person could take my son out.  There would be no flexibility in adjusting staff for various outings since the house would be isolated from other similar homes and therefore have no ability to share services and activities.

Below are some real life experiences I have been told:

1.  In looking for a supported living home, we were only allowed to go there when the residents were not home.  It was a violation of privacy to know who else lived there.  We would not know who our son would be living with.

2.  We were promised to have a supported living home with only female roommates – as it turned out, the house had two males and one of those already had the master bedroom with a private bath.

3. The supported living agency said that they would move some people around to make room for my son.  Can they just decide to move people to make room for others?

4. There are no homes in our community.  My daughter is on a core waiver and was in crisis emergent short term stay at an ICF/ID.  DDA promised us a home in our community but there are no “openings” and no foreseeable openings in the future.  We are in severe crisis while there is a whole unit at our local ICF/ID where we have requested placement but admissions are closed.  There are no options – do I just take her to the hospital now?

Just to highlight the issues of this new CMS rule.  This rule will create more crisis because there will be LESS choice for residential services.  This means there will be little support for those who do not fit the mold of the type person which CMS seems to think all people with intellectual disabilities come from.  This rule will save CMS money because the options will be severely limited.  This does not mean that more people will be served according to their individual support needs. This means that fewer and fewer people will be served because the choices are limited.

We need someone to market the honest truth about caring for our loved ones, the supports they need, the supports they choose and the communities which they want to live in.

 

Addendum:

About 10 minutes after posting my last post I received a message from a friend asking for help.  She was concerned about a young woman who lives in a supported living home for people with intellectual disabilities in her community.

This woman has been out in the middle of the street in a wheelchair asking any passer-by to use the phone so she can call the psychiatric hospital, so she can call 911 or so she can call a family member.  She has been seen out in all kinds of weather and not dressed appropriately for the weather, in bare feet walking with her wheelchair and at all times of the day and night.  She has had staff with her and when neighbors stop to inquire the staff says it’s her choice – they can’t do anything.

Other times she has been left with no staff and she has asked strangers for help to push her wheelchair.  Many times the police are called, they arrive and check things out, the agency which runs the home has been contacted by neighbors who are concerned and nothing improves for this woman.

I advised my friend to call the End Harm Hotline and report this – but I’m not hopeful that anything will improve.  If this was your adult child who was living in a supported living home, would you consider this as a safe and appropriate setting?  I sure wouldn’t but this is the type of “community” setting which CMS believes is better for these individuals.

Choice does not mean being allowed to do anything you want whenever you want – choice needs to have guidelines and choice needs to be within the person’s understanding of consequences for making those decisions as much as possible.

Where is the logic in this plan?

 

Crisis Care in Crises

It’s not secret, our state has made a huge mistake. We have legislated a huge gap in care for our families experiencing life with intellectual disabilities, particularly if the person is 21 or under.

In 2011 our state passed SSB 5459. This bill had several critical errors – some based on faulty cost reports and projections and some based on poor judgement and understanding.

Poor Judgement and Understanding:

Crisis care, respite and intense out-of-home placements were eliminated for those 21 and under. The thought was that “children need to be at home with their families.” Yes, that is true but as one of the directors of the newly forming Crisis Stabilization Unit testified, “some families do not want their kids back home.” That statement made me physically ill because it stigmatized families who are not able to safely care for their children, no matter how much they WANT them at home, it is impossible. To say these families “do not want their kids” home shows such disregard and misunderstanding for the stress these families live with.

Five years ago I never, ever would have imagined that I would not be able to care for my son. On the eve of my 55th birthday, as I look back over the past 5 years, our family went from one of unity and cohesiveness to obliteration. The only reason that we are here to tell the tale is due to out-of-home placement at the intermediate care facility when my son was 15 years old. The heartache I felt making this decision was unbearable and still, today, it greatly saddens me that I cannot care for my son – no matter how much I would love to, I can’t.

In the past 5 years not only did my son’s dementia worsen which led to prolonged mania and psychosis – on top of his already profound developmental disability, but in my attempts to care for him, my health plummeted. I have had 27 hospitalizations and/or surgeries in the past 5 years with many complications. Injuries incurred from caring for my son began to build up over time and I felt like I basically imploded. The development of a chronic lung disease (autoimmune) and the related symptoms make it impossible for me to care for my son – yet people don’t see this part of the family’s lives.

Rather than understand, people judge – as the director did of the families who could not have their child return home.

Faulty Cost Reports and Projections:

Frances Haddon Morgan Center (FHMC) was closed. FHMC could care for 60 individuals with full, comprehensive, intense crisis care, provide much needed respite, and provided much of the care for our youth and for those with autism. There were some extremely costly errors which led to “savings” projections which were actually Costs. This never should have happened, but it did.

I can’t even begin to write about the stupidity of the decisions so am just providing this photo. I think it will give an idea of what happened – how much more money was spent to serve about 1/10 the people – certainly not a cost-effective or sustainable decision – serving much fewer people for over twice as much!

average cost per day per resident

According to Informing Families Building Trust (Developmental Disabilities Council) the passage of SSB 54559 in 2011 created a huge gap in services. 

Not only did this bill close Frances Haddon Morgan Center but also prohibited those under 21 from being admitted to an RHC.   Many of those in this age group would have gone to Frances Haddon Morgan Center for crisis care and respite. 

To bridge that gap, DDA opened a house in November 2012 which could house 3 youth ages 8-21.  The services are very similar to what was provided at Frances Haddon Morgan Center.  The goal was to take these children as they are in the community, stabilize them as much as possible and slowly integrate them back into the community.

There have been 7 children able to utilize these services, 2 are currently residing there, of the 5 who have left, only 1 was able to return home with supports.  The other 4 were placed in voluntary placement services – an intensive out of home placement for those under 21.

Please review the “savings” from closing Frances Haddon Morgan Center.  According to the reports we would have had a large savings to not only open two crisis stabilization centers but provide more community care.  Unfortunately, the projections were so wrong that we have now created more of a crisis.

Please do not let this happen again – It is critical to review the DD Audit and understand the information provided in that report is as skewed or more than the data provided in 2011 for the disasters that SSB 5459 produced.

 

DDC and DDD sending survey regarding “No Paid Service”

 

In early September the Informing Families Building Trust project will send a letter to individuals with developmental disabilities and their families who are on the No Paid Services caseload.  This letter will invite them to participated in a short online survey.  The survey, which is a collaborative effort of DDD and the Washington State Developmental Disabilities Council (DDC), is being conducted to understand what individuals not receiving services and their families need and to better inform advocacy for appropriated funding of services.

Please encourage families who receive the letter to complete the survey.  Survey responses are confidential but are extremely valuable in helping us better understand people’s unmet needs.  The survey will be open from September 7 to September 30, 2011.

If you have questions about the survey, contact Eva Rooks at the DDC by phone at 8—634-4473 or by email to eva.rooks@ddc.wa.gov.

Thank you.

State Audits Show DSHS lost over 2 million dollars due to mismanagement

The Department of Social and Health Services is so mismanaged that they have lost over 2 million dollars in our public funds in just the past couple of years.

I want to know why the department is not scrutinzed and held accountable for thier lack of ability to manage payroll, contracts, benefit payments etc. yet say they do not have the budget for cost effective, crucial programs and services for our citizens with developmental disabilities.

Why is DSHS allowed to cut programs, why do some prominent agencies which masquarade as disability advocates, some of these even paid with our public funds themselves, advocate for closure of needed and desired programs while at the same time pushing for the undertaking of costly experiments with the lives of our most vulnerable citizens?

I am outraged by not only the lack of accountablity but the lack of integrity in the managment of DSHS and the integrity of some advocates (The Developmental Disabilities Council, The Arc Chapters, just to name two – there are more involved in this scandulous cover-up)

Our legislators and public are not told the truth about the costs nor are they told the truth about what is found in the data of many reports.  Not only is much of the data misrepresented but U.S. Supreme Court Decisions, such as Olmstead, are misrepresented by these agencies.

It is time that we, as grassroots advocates, make these issues known and upfront.  It’s a hard battle to fight but we need to do it for those who cannot do it themselves.

See this document for resources, facts, Washington State Auditor’s reports and other issues.  Many of these issues were defered and will be looked into this year, hopefully.

DSHS Audits and losses

Please Listen to Us!

I am attaching some very interesting documents.  What I would love to know is if the Department of Social and Health Services and The Department of Developmental Disabilities are listening to the people they are serving.

To me, from looking at the Joint Legislative Audit and Review Committee (JLARC) DDD Assessment Report dated January 31, 2009, it clearly outlines the numbers of people and the programs and services requested.

JLARC Final Report 013109 DDD assessment

This is what I find very interesting and confusing:

Program Requests:

ICF/MR – 20

Roads to Community Living – 1

Service Requests:

RHC or ICF/DD services – 40

Roads to Community Living – 1

Looking at what was requested by the people, it is clear that the people are requesting the ICF/DD services much more than the Roads to Community Living Services.  Why then, is the Department downsizing the ICF/DD’s and putting thousands of dollars into the RCL program?  Why is the State of Washington spending over $250,000 on a “Family Mentoring Project” for the Roads to Community Living when it is clear that the people involved are not even asking for this? Is this being a responsible steward of our public funds? Is this being cost effective?

It is time to listen to those who really receive the services and programs – not those who masquarade as their advocates.  The people have clearly spoken and they are asking for the services in the ICF/DD’s.

Please Listen to Them!

Number of Programs which DDD Clients Access:

Number of progrmas which DDD clients access

Other DSHS Services Received by DDD Clients:

Services Received by DD Clients in FY 2008

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper

When I read this article and see no mention of SSB 5459 in this – I realize that the bill that was so critical in my mind was of little significance to the state as a whole.  I have a hard time coming to grips with this and then wonder, if this bill was of such little significance, why didn’t legislators listen to the sensible and responsible facts that were brought to their attention and vote NO on SSB 5459?  There must be another reason that overrode responsibility, basic human and civil rights, personal choice on residence as guaranteed under the Federal Olmstead decision and the Centers for Medicaid and Medicare Services guidelines.

If anyone could enlighten me as to what deals were made which caused this bill to pass I would love to know.  Maybe if I understood what was exchanged in order for a responsible, humane and sensible person to vote yes on this bill,  I could understand why innocent people were made scapegoats for such an “insignificant” bill.

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper.

What’s the Better Deal?