Parent letters to our Legislators asking for support for our loved ones

Letter #1 – Child is 18

I am contacting you a second time to restate my concern and urge you to please do NOT vote to close Washington’s residential rehabilitation centers.

This idea might sound tempting as it is being marketed to you by DSHS and the supporters Sec. Dreyfus has rounded up, but I can assure you that it will be a FALSE SAVINGS and cause unimaginable human suffering.
Incidentally, we learned that DSHS recruited someone from Indiana to tell you how wonderful their state’s closure of facilities for the disabled worked out.  My wife and I are from Indiana.  We have specifically ruled out relocating to Indiana because of the lack of care for the disabled there.  Our friends and relatives have told us to stay in Washington because the lack of adequate care for profoundly disabled in Indiana is a disgrace.

Our own daughter is PROFOUNDLY DISABLED and her behaviors push the Morgan center resources to the limit.  There is absolutely NO ONE in a community living arrangement that could ever deal with her.  That is WHY she is now living at a RHC.  It is not like we chose this as a comfy choice out of many options.  There was no where else to go other than there.  Any other option would either put her literally at imminent risk of serious injury or death….or she would end up in the criminal justice system and that is no place for a disabled person with the cognitive level of a preschooler.  The SOLA proposals presented by DSHS are so inadequate that they would be laughable if this was not such as serious situation.
RHC residents are not a quiet, compliant bunch of sheep who will happily graze grass wherever you put them.  Many residents have EXTREME, DANGEROUS, UNPREDICTABLE behaviors.  You and your fellow legislators, the Secretary and the Governor should first go and actually work at an RHC 1:1 with residents for an entire month before vote on the future of these wonderful resources for the disabled.
Please consider the following and reiterate this to your fellow legislators:
There is no cost savings in closing RHCs:
  • It will cost more money to move residents and upgrade other facilities.
  • A high cost patient is high cost WHEREVER they go, provided they get the same services.
  • Taxpayer’s expect fiscal responsibility in tight financial times, not unnecessary spending.
RHC Services should be fully utilized:
  • RHCs have the capacity to serve more citizens with developmental disabilities, thereby lowering
  • the cost per client (economy of scale) Sharing services reduces cost.
  • RHC professional services and over sight can be provided to citizens with developmental disabilities in nearby communities, that do not have access to these services. Thereby decreasing the DD waiting list.
Safety:
  • People with severe/profound cognitive disabilities/developmental disabilities are unable to advocate for themselves and therefore are at a high risk for abuse and neglect.
  • They need to be in a safe physical environment where they have close supervision by consistent staff who can understand/anticipate their needs.
The community is unprepared:
  • DSHS and the legislature have not provided acceptable RHC alternatives.
  • Group Homes/SOLA’s do not provide the same level of care as RHCs, not even close.
  • These alternatives do not offer the safety, or level of supervision that people with profound and severe cognitive disabilities need. There is no back up staffing, active treatment or on sight behavioral or medical support.

 

Letter #2 – Child is 17

I am writing to you with our personal story of trying to get stabilization and crisis intervention services for our son.  Thomas is now 17 and resides at Fircrest – a move which not only saved his life bur the life or of family which had disintegrated due to multiple crises with him and the health of other family members, particularly me, his mother and primary care giver and his siblings.

 

Thomas has a rare genetic disorder manifests as a developmental delay – he needs assistance with all personal care,  can not write his name, is not toilet trained, has no insight into danger or thought processes.  At age 13 he started having manic/psychotic episodes (part of his disorder) and since then his brain has started to shrink (dementia).  In spite of these issues, he is the happiest guy and friendliest guy you’ll ever meet.  Yet, he does need CONSTANT interaction with someone in order to maintain his thoughts and behavior.  He flips between wonderful and uncontrollable in a second but can then flip back.  It’s really quite unbelievable and unless you actually witness it, it is hard to imagine.

 

It is this immediacy of changes that requires extra support people.  Having someone to call on the phone if support was needed would only increase the destruction since that would take the person’s attention away from Thomas.  If there are others that need any sort of attention (even just a verbal reminder) during one of these times, that lack of attention toward Thomas would cause destruction of property and most likely  self abuse (he hits and bites himself).

 

I will get graphic in this next section to try to give you a glimpse of every day occurrences that happened in our home which will illustrate the necessity of having adequate staff in house to manage the care of the residents and keep them safe.  I have lived through this many times having Thomas, his sister who has bipolar disease and a younger brother who Thomas would attack whenever Thomas got upset.

 

Scenario:

 

Thomas needs immediate attention to change a poopy diaper –(remember he’s 15 and not toilet trained – and big)  he does not tolerate being poopy yet he is not very cooperative in allowing me to clean him up.  As I’m gathering the supplies, he starts to scream and chant, hit his belly which in turn sets his sister off yelling because she can’t tolerate his screaming.  Her screaming in turn escalates Thomas. The noise brings our youngest son to the door, Thomas runs to start attacking him, I try to grab Thomas (he does not respond to verbal instructions and needs physical directions and supports most of the time) so that he doesn’t hit his brother but his younger brother then yells and swings at Thomas in self-defense.  I get the younger brother back into his room, my daughter is now in her room screaming that she “can’t take it” and I attempt to get Thomas to lay down so I can change him.  I get him down and almost cleaned but didn’t get enough wipes. During this time, he is rolling, pushing my hands away and being uncooperative.  I have to get up to get more but in the meantime, Thomas, still not clean gets up and steps in the dirty diaper – I try to get back to him before too much mess is made while he escalates because he doesn’t like being cleaned up and just wants to go do something else now – this escalation of his further escalates my daughter.    Okay – finally got him clean – he’s up and running around now but I still have to manage his behavior, try to calm my daughter, attend to my youngest sons questions and clean up the poop that has now been stepped in and smeared.  Get that all done but since it took my time and attention away from Thomas, he has since moved on to something else which I need to either clean up or get him that he can’t wait for.  He doesn’t understand that I need to clean up one mess before tending to his next need.

 

 

This scenario and many like them go on over and over.  This is why support staff is needed – not only for the person who needs tending to but in order to manage the other residents.  Support staff can not be cut – they are the people who keep our residents safe and healthy.

 

I am a nurse and have worked in labor and delivery for over 25 years.  I have not been able to work more than 2 days a week due to my caretaking demands and have never had a vacation.  All of my vacation and sick time has been used for crisis management for our children.  As a labor and delivery nurse, I hear the same thing at work – why do we need to staff with nurses if there are not patients there right then?

 

The reason is that at any given moment we could have two lives in danger and we need staff there to deal with the emergency.  You would not want to call in and wait for nurses/doctors/anesthetists to care for a laboring mom whose life is in danger which could also mean immediate death for her baby.

There are certain professions which need to be staffed and ready to go at a moment’s notice for the health and safety of everyone.  I look at the support staff in the RHCs as one of these professions.  If they weren’t there for back up and support – next in line is 911 and the paramedics.  The support has to be there.


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