Congregate is not the same as segregate

I am very disappointed with the Joint Position Statement published June 23, 2016 by The American Association on Intellectual and Developmental Disabilities (AAIDD) Association of University Centers on Disabilities (AUCD).

While there is quite a bit of quality information in this statement it is obviously clear that these organizations also have a strong bias against choice of residential settings.  It is unfortunate that these organizations do not understand that congregate care is not the same as segregated care.

“Everyone with an intellectual or developmental disability deserves to live in the community where they have the opportunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions.”  These goals can and are also accomplished in congregate and campus type communities.

Many states have built systems that utilize group homes as a key way to support people in the community. When people find themselves in a situation where they need to live outside of their family home, they are often placed in an “open bed” versus being offered person-centered supports designed specifically to meet their needs. In many of these situations, people remain as isolated in these settings as they do in a large-scale institution. A process for creating and sustaining supports that make their living situation a home in a neighborhood is needed.

It is clear from the above statements that these organizations realize there is a problem with the funding and system that many supports are built around.

Yet AAIDD and AUCD are doing exactly what they chastise others for doing – categorically denying the individual the personal choice for individualized care in the residential setting they choose.  The setting is not what necessarily causes the segregation – separation from familiy, friends and community causes segregation.  Unfortunately that segregation can happen in any residential setting.

It is the segregation that needs to be called out – not the setting.



Not Just the Next Empty Bed

Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement.  It was a difficult decision to make given all the research that I have done regarding care and oversight.  Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community.  I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings.  I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.

But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger.  There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns.  The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly.  My hands were tied  due to the inability of the facility to acknowledge problems – not one specific problem but many.  I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.

But, my son had one option in this that most other people do not have – the option of CHOICE.

While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him.  We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.

Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies.  When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.

One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)

We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.

It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available.  This is not a system which supports person-centered choice or real community.

There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.

Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.

Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community.  My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.

Letter from DRW to DSHS and HCA

DSHS and HCA response letter

#‎ArnaldoRios and Ableism

Given the events of this past week my mind has been reeling with emotions.  There is so much that needs to be said and done to help make our communities inclusive of all people.  So much wrong has happened and innocent individuals are hurt and traumatized.  One young man with autism (#‎ArnaldoRios‬) is having a very difficult time and is now hospitalized in a psychiatric hospital due to the trauma he endured.

I, too, have a son about Arnaldo’s age and I just recently had a fairly major issue in a local grocery store with him.  Unlike Arnaldo, my son does not sit still and he is verbal, but he jumps up and down, runs without awareness of safety, screams, yells and bites and hits himself –  and does not respond to verbal instructions – particularly when he is scared or when someone is yelling at him.  This happened before the incident with Arnaldo but it has made me feel more afraid for events in the future.

My son lives in home in a supported living arrangement.  He is part of our community – but that also comes now with added risks of being shot and abused by those untrained in how to work with people with disabilities – particularly those who are on the autism spectrum.   Living in homes in neighborhoods comes with the risk of running out into the street and being harmed.  We have to think of safety  and the risk of harm.  Many believe that parents error on the side of safety while other advocates think people need to be able to take more risk in their lives.  They believe that risk taking leads to learning.  This may be true but it also needs to be assessed for each individual.

Some people do need – or choose – to live in a campus based setting.  This type of setting provides a buffer of sorts from busy streets and also provides for an environmental setting that is clearly differentiated from those of busy, intersecting streets requiring one to be aware of traffic safety before adventuring out.  A campus setting does allow independence and freedom and risk taking while providing a safety net for those who need or want it. I would love to live in a campus type setting with mixed-housing for families, community members and people with disabilities.

A couple of questions that I have that I have not seen addressed in the many reports of this incident are:

  1.  If this was a known group home for people with intellectual disabilities or a mental health institution (I’m still not sure what type of home/facility it was) – why did the police not know about it and know that there may be a resident with a disability who may be in distress?  Are the police not aware of the neighborhoods they patrol?
  2.  Why was Arnaldo placed face down on the road, (handcuffed?) and forced to sit in the back of the police car for 3-4 hours?  Why weren’t other caregivers, family or mental health professionals called to tend to Arnaldo while Mr. Kinsey was transported to the hospital? It really should have been clear to the police by that time that they were out of their element and needed other help to manage the situation.

In an article written by David Perry he writes:

“Ableism leads officers to approach people with disabilities as erratic and dangerous. It also leads them to perceive noncompliant behavior as a sign of threat, rather than a sign of disability.”
He also writes about the principle of “ask-tell-make” a tactic many police are trained in.  “First you ask someone to comply with orders, then you order them, and then you make them through the use of force. It’s supposed to keep the officer safe, but some police trainers argue it’s a recipe for escalation and places both police and civilians in danger. Rather, such trainers argue, police need to take in the broader tactical situation when deciding how to respond, rather than simply keying off noncompliance”  Unfortunately this tactic is generally not appropriate for use when working with people with intellectual disabilities, mental illness or both of these disabilities.

I am glad that this issue is getting a lot of attention but I am so very sad about the trauma experienced by Arnaldo and Mr. Kinsey.  I have tears in my eyes every time I see a photo of the scene or of Arnaldo – I can’t help but think about my son and others I know if something like this ever happened to him.

Thank you, Mr. Kinsey for being there and caring.  You are a hero.





Healthcare disparity in Washington – what about your state?

As I am in the process of trying to remedy a healthcare disparity situation for people with intellectual and developmental disabilities, I am very curious how the oversight of healthcare in the Intermediate Care Facilities for People with Intellectual Disabilities (ICF/ID) is managed in the various states.

In Washington, we refer to these communities as Residential Habilitation Centers (RHCs) and are either State Operated Skilled Nursing Facilities for people with Intellectual Disabilities, an ICF/ID or a combination of both types of facilities.  The 4 remaining RHCs are all campus based communities.

One of the several problems that I have encountered in this journey is that the laws and rules are different for skilled nursing facilities  (SNF) and the ICF/ID even though they are both under the RHC umbrella.  The SNF clearly has full oversight by the Department of Social and Health Services and is clearly a “long term care facility” by  both state and federal regulations. The residents of the SNF are represented by the Long Term Care Ombudsman in our state.

In the Revised Code of Washington (RCW) the ICF/ID is not included in the definition of “long term care facility”  yet it is considered a long term care facility by the Department of Health, the Department of Social and Health Services and the Health Care Authority – but under the FEDERAL SOCIAL SECURITY LAWS  the ICF/ID is considered a healthcare institution and that the resident’s healthcare be provided for under the Social Security Act. The RHCs are promoted as “full service, therapeutic communities” and it is believed that the “healthcare clinic” is a licensed clinic when it fact there is no healthcare oversight of the medical and nursing care provided at the RHC to ensure the standards and quality meet the current standards of care.

The medical providers at the RHC act as the primary care providers for the residents and even if a resident is seen by a community provider or specialist or referred to another provider, it is the RHC provider that is required to write the order for medications to be prescribed or for nurses to carry out treatments. The healthcare for RHC residents is managed as a “health home” with the exception of policies , quality standards to meet and oversight.

The ICF/ID functions as a “Medical Home” as the healthcare provider for the residents.   The definition provided in  RCW 74.09.710 states the following:

“Medical home” means a site of care that provides comprehensive preventive and coordinated care centered on the patient needs and assures high quality, accessible, and efficient care.”

“Health home” or “primary care health home” means coordinated health care provided by a licensed primary care provider coordinating all medical care services, and a multidisciplinary health care team comprised of clinical and nonclinical staff.

As I read the Social Security Laws and the Code of Federal Regulations, it seems clear that the State health agency should be responsible for establishing and maintaining health standards for the recipients of medical assistance under the plan (as all residents in the RHC do).

This is clearly not happening in Washington – what about your state?


Healthcare Disparity letter to Legislators


The Move to “the community”

Recently we moved our 22 year old son from the ICF/ID he had lived at for the past 5 years to a home in the community in a supported living environment.  The differences in communication and collaboration have been astounding to us.

As an advocate I do support the ICF/ID and we would have probably never considered a move for our son if it had not been for the medical and nursing neglect and abuse that our son suffered for the past 4 years.  We loved the campus community and our son was very happy. It was solely due to the medical/nursing neglect and inability of the team to provide for our son’s healthcare that we started the process looking for another residential setting.

There is an ongoing investigation into many of the neglect and abuse allegations and I am in the process of gathering documents, photos, and emails as evidence in this investigation.  Reading this exchange that I had with the ICF/ID manager about the night I had to come take my son to the ER to be evaluated for a medical problem they refused to assess became the typical type of response I would get for the many subsequent medical and nursing errors and neglect from December 2011 until he moved in March 2016.

Remembering this event makes my blood boil and I am furious that a concerned parent was treated with such disrespect.  I also have to say that the questions I asked were never addressed and the “primary care provider” at the ICF/ID never had a conversation with me about this issue.

Bowel obstructions are one of the leading causes of preventable deaths for people with intellectual disabilities.  This is the condition that I had suspected may be occurring with my son but the team refused to consider it as a possibility.  They believed he was having behavioral problems.

One night I just happened to call only to find out that he had not had a BM for 6 days and they had basically been giving him a prep for a colonoscopy and he was still not having a BM.  I was so concerned that I decided I finally needed to overstep them and take my son to the ER.  I arrived at his unit one hour after I had called and it took them 2 hours before they would allow me to leave.  This was my first experience with anything like this and in subsequent issues when I needed to take my son to the ER I would just go and take him – the paperwork could wait and I did not need their permission to take my son to the ER.

Thursday – email from manger to the mother – 6 days after the event and this was the first communication that I had from the manager!

You are welcome to come and visit Your Son any time you like as you did last Friday.  We do ask that when you do visit please remember that this is a home and there are other clients who live here. During the night when clients are sleeping please try to be quiet enough not to disturb them. During your visit several clients woke up and did not go back to sleep after you left the unit.


Thursday Afternoon – response from the mom to the manager
Remember also, that he is my son and I was rather concerned about him and was not getting a response from the team with regards to my concerns regarding issues with MY SON and my concerns about the possibility of this fecal incontinence and constipation being an issue of neurodegeneration rather than behavior/functional issues.  I’m rather upset that it had to get this far before my suspicions were confirmed and not one person has apologized to me or said anything regarding “I’m sorry this took so long to figure out” but get reprimanded for waking clients?   Do you realize the critical issues that could be involved if this was left unattended to?

I was trying to be respectful and I believe that one client was already awake.  Given that I had to wait there for over an hour with MY SON while the nurse and duty officer were called and then had to wait until they went and copied information, I would have been out of there much sooner but had to wait due to issues there.

Is it protocol to inform parents about changes that are done?  I had no idea about the medications that MY SON was given and also that he did not go to school on Monday but instead went to Respite care.  I found out about the respite care when I arrived to get him in the evening.

What is standard protocol?

By now, it should be clear that I am an involved parent and would like to know what is going on with MY SON if there are changes.  This did not happen.

I will continue to be an advocate for my son and others and as I pointed out the only reason that I was there so long was because I had to wait for people at the ICF/ID to get the paper work and issues together.  I would have gladly just taken him but I was not allowed to.

Friday morning – email from mom to manager

Maybe you missed the reason for my “visit”.  I was there to pick up MY SON to take him to the EMERGENCY ROOM for a medical problem.  A medical problem that I had attempted to inform the team of there at the ICF/ID but one to which the team did not think that MY SON had.

What issue about this are you complaining about?  I would have gladly just taken him but I was told that I was not allowed to do that and had to wait while it was figured out what staff, the duty officer and the nurse needed to do to allow me to take MY SON to the ER for a medical problem.

As you know, MY SON talks – ALOT. Particularly when he is ready to go and cannot leave.  I was doing the best I could to keep quite.

Or, are you complaining about when I brought him back and showered him and cleaned him up and put him to bed?  At that point, he was leaking poopy enema fluid uncontrollably so I thought it was best to clean him up.

Of course I would not generally “visit” at that time of night but given the circumstances of the situation and the timing of when I, as his parent/guardian, found out about the medications that were given to him without my knowledge and that there was no result from that medication, it was in MY SON’s best interest to take him to the ER and be treated.

As you know, I had attempted to have this issue treated in a non-emergent fashion but no one at the ICF/ID seemed to believe that MY SON had problem and would not do the test to rule out what I believed (and has now been confirmed) the problem was.

I’m sorry that another resident may have woken up in the process of taking my son the ER to have a medical problem taken care of which was not being addressed there.

When a medical issue arises are the major concerns about other residents waking up or about the medical issue?  Sometime there are priorities and it doesn’t mean that you don’t care about some of the other things but when making priority decisions sometimes other things happen that can be dealt with later.

Again, this was not a “visit” as you have written but a medical issue for which I took MY SON to the emergency room.

Saturday morning email from manager to the mom

I am aware that you were not there for a visit, and that you were there to take your son to the ER. I should have stated that you are always welcome at any time. Again I was just asking you to respect the other clients that live with your son especially during sleeping hour. I understand that you had to wait for some time until the staff, nurse and duty office could gather up all the necessary information so your son could go to the ER. In the future if it is possible for you to call ahead of time so the proper information could be prepared for you and easy the transition/ wait time to get him to the Doctors.

Saturday afternoon – email from mom to the manager

I would hope that there will not be a next time and I would not ever “visit” at this time of night anyhow except in an emergency. I had no idea that I would have to have all that paperwork in order to take my son to the ER.  Also, I had called earlier around 9:30 or so when I found out that he had been given mag citrate and I told whoever I spoke with that I would be coming by.  It took me that long to leave where I was and get to the ICF/ID.   This was an unusual circumstance and rather than chastising me wouldn’t an apology or comment regarding the fact that we can now understand what some of the issues with my son might be would be in order?  I’m not one to come in and make a disruption for my son’s housemates and I try to be respectful of what is going on.
I am still waiting for information regarding medication administration and respite care without notifying me.  This is a learning process knowing what the protocols are and what is and is not expected.
The reason this interaction is highlighted is that this past week my son missed a scheduled appointment.  I wrote to the house manager and the response I received was a prolific apology and her statement that it was her fault that the appointment was missed, what the circumstances were regarding the issue and how it was going to be remedied.

I was actually treated well and respected as a caring parent and given an honest answer. This response would have never been given to me from the ICF/ID.

Sometimes all one needs to hear is “I’m sorry.”


I (and others) have been misled

For several years I was under the impression that the Intermediate Care Facility (ICF/ID) and Residential Habilitation Center (RHC) where my son lived was also a healthcare facility.  We were led to believe that the medical and nursing providers had oversight by the Department of Health which also provided oversight to what was referred to as “the healthcare clinic.”

The ICF/ID and RHCs are NOT healthcare facilities.  There is no professional peer review or oversight by the Department of Health.  I have learned this lesson after years of frustration trying to get appropriate medical and nursing care for my son who was a resident of the RHC.

While these facilities in Washington State employ Physicians, Nurses, Physical, Occupational and Speech Therapists to provide care to the residents, there is no state oversight of this care to ensure it meets the community standard of care that everyone should be entitled to.  The residents and their families/guardians are led to believe that appropriate medical and nursing care is provided but in some cases, I believe this is not happening.

This is a systems problem that no one seems to be able to address.  The Department of Health has no oversight, the Department of Social and Health Services does not look at healthcare standards, the Long Term Care Ombudsman does not oversee anything having to to with the Intermediate Care Facility or RHC, Disability Rights Washington (the Protection and Advocacy Agency) has not addressed this problem.

I fully support the idea of an intermediate care facility and a campus community that can provide full service health and behavioral care but the system in place in our state does not meet this standard.  It is shameful that the agency which oversees the RHC cannot see that there are major problems ensuring the healthcare for the residents is provided for.

It appears to me that our state is not meeting the Federal Regulations  and the so-called “investigations” that have been done have been a waste of time and energy.    This is so frustrating  – when they can not even see the problem, there is no opportunity to fix it.  The whole system is in denial and it is only hurting the very people who are supposed to be helped.

The investigator I spoke with today made it very clear by her repeated statement of “the RHC is not a healthcare facility” and by the regulations she had there were no deficiencies to cite.

I read the Code of Federal Regulations differently though – Below is the exact text from the Code of Federal Regulations  – am I reading this incorrectly?

  • 440.150   Intermediate care facility (ICF/IID) services.

(a) “ICF/IID services” means those items and services furnished in an intermediate care facility for Individuals with Intellectual Disabilities if the following conditions are met:

(1) The facility fully meets the requirements for a State license to provide services that are above the level of room and board;

(2) The primary purpose of the ICF/IID is to furnish health or rehabilitative services to persons with Intellectual Disability or persons with related conditions;

(3) The ICF/IID meets the standards specified in subpart I of part 483 of this chapter.

(4) The beneficiary with Intellectual Disability for whom payment is requested is receiving active treatment, as specified in §483.440 of this chapter.

(5) The ICF/IID has been certified to meet the requirements of subpart C of part 442 of this chapter, as evidenced by a valid agreement between the Medicaid agency and the facility for furnishing ICF/IID services and making payments for these services under the plan

So, my questions are is our state our of compliance by the ICF/ID or RHC not being a healthcare facility?

If so, how is this remedied?




The Right Tool for the Job

As anyone who does carpentry knows, having the right tool for the job is critical to success.  This  statement does not only pertain to carpentry though – it can be applied to many professions and life skills.  Sure, one may be able to “make do” with other tools but would you really want your surgeon using instruments meant for large bones being used on small, intricate bones?  I shudder to think what the outcome would be.

The same thing is true regarding speech and communication.  I have long held the belief that just because someone talks does not mean that they are able to communicate and make their needs understood by others.  In some respects the fact that a person talks may actually inhibit their ability to communicate because people will assume that since the person talks, they can say what they want to and not look for alternative methods that may work better for that person.

Another example is the use of writing.  We tried for years to encourage my son to learn to write with a pencil.  He had no interest in holding it or using it for things other than trying to stick in his ear or up his nose.  We then tried to get him interested in writing his name, and then at least his initials, which was barely successful before he would drop the pencil and move on to something else that caught his attention.  Yet, he was able to learn to read and reading has continued to be one of his favorite joys.

My son can talk and read so it had been assumed that he would be able to communicate his needs.  People assumed he would ask for help if he needed it or tell them when he was hurt – because he could talk so why wouldn’t he do these things?  I do not know the answer to that but I do know that he would not communicate those needs to others.  I knew that I needed to find another tool for him to use so that he could communicate – not necessarily through his speech since that was not serving the purpose for him.

Finding the right tool for him took time and convincing.  Speech therapy was focused on speech – not communication so he did not qualify any longer.  He had long since stopped improving with his articulation so therefore with no improvement happening, it was assumed he had reached his potential.  My son was able to learn to “type” and given his strong sense of curiosity, he learned that typing would enable him to communicate his needs and desires.  But, there was a problem, he needed to ask to use the computer at his place of residence.  Even though he had a strong desire to communicate he would not ask to use the computer and therefore it was assumed that he didn’t want to use it.  There were other reasons why he would  not use it even if it was offered  – the major reason is that it was in a corner far from the “action” and he didn’t want to miss out on anything.

Since my son did not live at home but in a state-operated residential setting, it was important for him to have communication with us.  We also needed to know when he had a problem and since he would not tell anyone,  there was no way for us to communicate with him either.  I decided that an iPad with internet access would be a great option for him to use to increase his ability to communicate.  The iPad is portable and he can carry it with him so that he doesn’t have to sit in a corner to send an email.  It also enables him to play his educational games with others – a method he uses to communicate – which was again restricted without the use of an iPad.

There were several problems we encountered.  The administration at his place of residence was not supportive  – they were concerned about theft and also did not want to provide internet access.  We persevered and told them that he would have an iPad and he would have internet.  We gave them 3 months notice – time to figure out how to provide him internet services so that his communication was not restricted. They were able to accommodate this need.

The independent use of the iPad greatly increased his ability to communicate.  It gave him a voice that he could use when his speech did not work.  It took a couple of years at school with his teacher and me helping him learn about email and how writing an email could improve his communication.  Once he discovered this tool, he has been unstoppable!

It has proven to be an effective method of communication for him – going from phone messages such as this  – 

with no idea what he is trying to communicate  to emails which are very clear and to the point – communicating his needs and desires.  I have received emails saying that his ankle was swollen and he needed his aircast, many with grocery lists of items he wants to eat, questions about when we will be picking him up for events and general comments about what is going on in his life or asking me how my day was.   I also have fun trying to figure out what he was trying to write because spell check does not understand his writing – sometimes it just cracks me up!

The iPad has greatly improved his independence and self-determination – goals that have been set by the Developmental Disabilities Administrations for people who receive services.

This is one reason that I am appalled by the lack of support in the DDA for internet access and iPad (or tablet) use for those who live in supported and congregate care settings.  Not providing these critical communication tools is a major restriction to these people in accessing their communities and staying in communication with their family and friends.

Rocket science is not needed to provide wireless internet service and the denial of this service is one form of segregation and restriction that needs to be addressed.  Without internet access, many people are isolated and will become more isolated as time goes on.

Here is another example of how this technology benefits not only the user but others in the community.  This young man is non-verbal but was able to write a message which saved a baby’s life. This is truly a magnificent story.  Non-Verbal Man saves baby’s life