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.

 

 

2 comments on “DDD forces families to make “Sophie’s Choice”

  1. Saskia Davis says:

    It is my understanding that within the “law” which inhibits teen admissions to RHCs DDD is authorized to make exceptions.

    To families who seek long term admission to RHCs:
    The following is my understanding as a lay person &is not meant as legal advice, just information which may be useful. I understand that a lawsuit is a difficult decision, yet, if DDD continues to deny admissions, it may become the one option left.

    For basis, at http://www.vor.net you can find toolboxes filled with helpful information. The following is a sample.

    The American Disabilities Act (ADA) Olmstead Decision does not exclude teens or children or any age group when it says: “Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing on a case-by-case basis, that setting may be an institution.” 119 S. Ct. at 2189″ For this reason, it is my lay opinion that Washington’s new law prohibiting RHC admissions by youth is probably in conflict with the Federal law and if so, subject to successful challenge.

    “Right to institutional services is legally enforceable: The right to institutional services has already been tested in Federal District and Appellate Courts in Florida. In Doe v. Chiles, 136 F.3d 709 (1998) the State of Florida argued that ICF/MR services are an optional Medicaid program. The Eleventh Circuit rejected the argument, noting that “even when a state elects to provide an optional service, that service becomes part of the state Medicaid plan and is subject to the requirements of federal law.” Id at721.”(http://lw.bna.com/lw/19980317/965144.htm)

    “The Home and Community Based Waiver is OPTIONAL, NOT MANDATORY, and cannot be imposed on an individual who qualifies for and chooses an ICF/MR. In fact, !CMS Regulations implementing this law stipulate that “CMS will not grant a waiver…and may terminate a waiver already granted” unless a state provides certain “satisfactory assurances”
    including assurances that “the recipient or his or her legal representative will be
    1) Informed of any feasible alternatives available under the waiver, and
    2) Given the choice of either institutional or home and community-based services.” (42 C.F.R. § 441.302(d). ”

    “‘Right to choose to remain indefinitely in ICF/MR services is protected by the Supreme Court decision in Olmstead v. L.C. “nothing in the ADA…condones termination of institutional settings for persons unable to handle or benefit from community settings…Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187, 17.

    “If a state elects in its Medicaid plan (as Washington does) to offer qualified individuals services in an ICF/MR, it must provide that “all individuals wishing to make application under the plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals.” 42 U.S.C. § 1396a(a)(8).”

    Cheryl and readers, please share this information widely, and let us all know by what means you try to gain RHC admission for your kids how your efforts
    are met!

    A word about the VOR. It is our advocate on a national basis. By “our” I mean all parents and guardians of people with ID and, of course, those people, themselves. It supports a continuum of care that includes RHCs and a broad variety of options within the larger community that are appropriate to the needs of the individual.

    VOR, correct me if I am wrong, but my understanding is that it is supported entirely by membership. I encourage membership so that it can be as strong and helpful as possible.

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    • Thank you, Saskia for your comment. It is critical that this issue be looked into. It appears to me, and again I am not a lawyer or legal authority either, that our state is discriminating against our youth who require this level of support care and also not following the rule with regards to using the HCBS waivers either.

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