State Ignoring Abuse in Group Homes

Article today in The Seattle Times highlights some of the issues which we are concerned about:

http://community.seattletimes.nwsource.com/reader_feedback/public/display.php?source_id=2019925424&source_name=mbase

I have written several times on just this issue.  Please see Throwaway People and previous posts regarding similar problems and concerns.

Unfortunately, it is not just our state which is lacking oversight of homes for people with intellectual and developmental disabilities (I/DD) – this is a problem which has gone unchecked for too long.  Too many people have been hurt, abused, killed because of this lack of oversight.  The overzealous efforts to “deinstitutionalize” have created another problem and it is time to look at this problem rather than continue to exacerbate it.  Let’s put the brakes on this disastrous experiment before more vulnerable people are hurt.

 

U.S. Department of Health and Human Services (HHS), Office of Inspector General (OIG) * June 27, 2012 
• Full HHS OIG Report
• Listen to Podcast / Summary of Report

• Read transcript of Podcast
Excerpts from Podcast:
“These [Home and Community-Based Services Waiver[ programs primarily serve the elderly and the disabled – people who are among Medicaid’s most vulnerable populations. And the very nature of the programs puts them at risk of receiving inadequate care. Most programs allow beneficiaries to be cared for by nonprofessionals without medical training.
“And, what’s more, beneficiaries receiving care in their homes are often alone and isolated from observers who might detect abuse or mistreatment. This is very different from the situation in nursing homes, where there are a lot of people who can detect and report potential abuse .
“Well, we went through the data that CMS collected, and we saw that CMS was aware of a lot of significant problems. CMS’s data showed that 7 of the 25 States we reviewed did not have adequate systems in place to ensure the quality of care.”

DDD forces families to make “Sophie’s Choice”

We are uniting and you will hear more of our stories of survival.  The Division of Developmental Disabilities (DDD) does not want our families to meet and build a community or allow our vulnerable children to  live in safe, stable and sustainable community.  Sounds strange saying that about a department which claims to value community and families and strives to keep citizens in their communities, doesn’t it?  It’s unfortunate but true that DDD, the agency which we need to work with to get services for our vulnerable family members with intellectual disabilities seems to do all it can to create crisis and chaos.

 

We are not survivors because of the help and assistance which DDD provided but because we fought unbearable struggles for our children and family members.  We fought DDD so that our family members could receive the “allowable” services on the Home and Community Based Waivers they were on.  We fought against DDD telling us to call the police for crisis care.  We fought against DDD telling us to restrict fluids so that our kids would not need extra absorbent diapers (for a neurological problem) .  We fought against CPS reports about the methods that we, as families, needed to do in order to keep our children safe from harm (putting special locks on doors for instance) .  We fought for allowable “home modifications” so our families could be safe.

You do not hear from those who are still struggling and in crisis.  I believe DDD wants to keep it that way.  Those families probably can only muster enough strength to barely make it through the day and survive – they have no energy or time left over to make their stories heard.  They barely manage (if you can even call it that) in isolation.  That’s the way DDD wants to keep it.  I know, I was there.

 

This is why we, as survivors, must tell the story for them in hopes that they, too, may become survivors, succeeding at stable, sustainable care for their loved ones.

 

Examples:

#1 – teen grew up in Seattle.  Family and healthcare team requested out of home placement at Fircrest Residential Habilitation Center (6 miles from the family home).  DDD DENIED.

After continued crisis and multiple hospitalizations and total family breakdown with the child at age 15 in his own crisis, DDD did say that child could possibly be admitted to Yakima Valley School ( YVS) (144 miles away from the family home) or Frances Haddon Morgan Center (FHMC)  (24 miles from home via hour long expensive ferry ride or 70 miles via highway).  DDD continued to deny admission to Fircrest (even short term or respite) to Fircrest which was in this child’s home community.

Family chose to admit son to FHMC (2009)  then petitioned the Division to move him to Fircrest due to continued health problems of parents and siblings which made it extremely difficult to visit son at FHMC.  Request to move this child back home to the community in which he grew up was granted after one year.  He currently lives at Fircrest, is stable, healthy and active in his home community.

#2  Family lives in Bremerton ( a mile or two from FHMC) yet DDD placed this teen at Fircrest (2008) prior to the closing of FHMC and they were still admitting teens here (see #1 who was admitted in 2009).  Family had been denied placement and was told the child would have to go to YVS (194 miles from family home.)  Child was able to be admitted to Fircrest (40 miles from family home where he currently lives in his community at Fircrest).

#3 DDD palce child at FHMC (90 miles from home) when Fircrest is 18 miles from the family home.  Child now lives at Fircrest due to FHMC closure.

#4  DDD place child at FHMC (again 90 miles from home) when Fircrest is 18 miles from the family home.  Child now lives at Fircrest due to FHMC closure.

 

Again, these are just 4 examples yet do they exemplify DDD attempting to keep our youth in their home communities?  This is not due to not having available resources and services in the home community.  As you can see, there were alternatives for each of these families which would have allowed their child to remain much closer to home than the placement that DDD finally agreed to.  We are gathering more so that people can hear the true stories of these families in crisis.

 

Currently, we are facing an issue with an 18 year old who is at Fircrest on a short term stay.  There are no safe alternatives in the community yet DDD is denying the requested admission to Fircrest.  In just the short time that this boy has been at Fircrest he has stabilized and has started to sleep through the night.  He is feeling safe and at home due to the support needs that he requires being available.  The family has requested that he be admitted.  This boy has been on the CIIBS Waiver, a federal HCBS waiver which states the family has the choice of in=home or institutional care.  The family has chosen institutional care after in=home care failed miserably and put this boy and his family at great risk of injury.  DDD is denying admission – based on age.  This is discrimination.  There are no other safe alternatives for this boy yet DDD is planning a discharge.  To where?  We will find out what their plan is this week.

 

Stay tuned.

 

 

Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute