Mental Age?

Motive asymmetry – the belief that one groups motives are driven by love, care and affiliation and the rivals are motivated by the exact opposite.  This term is generally referred to with regards to political conflict but I see fully activated in the issue of advocacy for those with intellectual and developmental disabilities.

It feels to me that motive asymmetry is at play with regards to trained self-advocates and parents/guardians/healthcare professionals/case managers/disability advocates when any topic related to care, support, employment, inclusion, residential settings and community environment are discussed.

As a parent/guardian/disability advocate, this concept is very clear to me since I have been told by many trained self-advocates that guardians are only self-serving. This is truly not my perspective at all but it is attributed to me since I am a guardian. One effective tool used to help bridge this conflict is to meet in person. Once you know the person, views and ideas may change. It is only by meeting people and working together as people, rather adhering to  inflexible ideologies, that we can break down these silos and make progress.

Mental age theory

Ivanova Smith has written an article in NOS Magazine regarding the issue of using “mental age” as a description for people who happen to live with an intellectual and developmental disability.  She states “We need to educate medical professionals that there are better and more respectful way to explain the needs of people with Intellectual/developmental disabilities. Difficulty doing specific tasks isn’t the same thing as being an actual child.”

I have never seen this description used to state that an adult with IDD is a child – they are adults who have a variety of support needs in many areas of life skills.  Using labels and descriptive terms for various ranks, steps or skill levels are used in all types of employment, school, sports and athletics,  and hobbies.  One must pass through step 1 to get to step 2.  This is a natural progression.  One need not necessarily master the step but at least have a passing effort before one is able to proceed or progress.  There could be many reasons for a rapid or slow progression through these levels.
People do not excel in all areas of life and do not need to be an expert in everything they attempt to have enjoyment and meaning from it. Also, people may “stall out” at one step and many years later may revisit and then gain more skills. This is not set in stone as it is a fluid process and there is always learning and progress occurring as people experience life. This progression is also true with developmental, emotional and maturity stages. It is not “good” or “bad” but just is.

I often hear that people do not like labels – but labels help us to learn and navigate life in so many ways. Think for instance of working in trades – there are labels applied to levels of skill development – apprentice, journeyman, master. One is not a better person than another by having a different label but has a different skill set. These labels help us, who may not be familiar with the work to be done, who we might want to seek out for consultation. Labels are not inherently bad but can be extremely useful in many situations.
I am asking for your input into how you, as a trained self-advocate, differentiate between people who may need an extreme amount of support to manage the daily activities of living versus someone who may only need some occasional guidance with specific areas? How do you, as a trained self-advocate, differentiate between someone who is unable to utilize public transportation and needs to be driven everywhere in a private vehicle versus someone who can navigate the city independently on public buses?
Or maybe you do not see the need to differentiate – if not, why not?

Please contact me Ivanova – I would love to meet with you in person.

Thank you – Cheryl Felak

 

Have you ever heard the phrase “that person has the mind of a five year old In an adult body?” It is something many adults with intellectual disabilities, like me, have to deal with. For years, medical professionals have told parents of newly diagnosed Intellectually disabled people that they would mentally be children for their entire lives.…

via Mental Age Theory Hurts People with Intellectual Disabilities — NOS Magazine

#inclusivity  #diversityisstrength  #YouAreTheChange  #beyondinclusion  #disabilityrights  #intellectualdisability   #disabilitysupport  #mentalage  #agetheory

 

Senate Health Committee Hears Bill which looks to close ICF/IDD

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans  to consolidate  from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling.  This is  not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility.  Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID?  The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus.  Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports.  These wages and supports need to be appropriately funded to provide the services.  This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

Thrown Off Balance

The past couple of years have seen a shift in my understanding of the quality of care that is provided for individuals with intellectual disabilities.  What I had been told and what I had believed were not the reality of the situation and it has been a soul-searching experience to confront the issues and to take action.

We started experiencing problems in the year 2011 regarding issues of medical and nursing care that was substandard and downright neglectful.  I started working my way up the “chain of command” within the intermediate care facility which was just an exercise in frustration that I would learn would only get worse as the years progressed.  I didn’t want to make trouble and I didn’t want to have a big investigation done.  I just wanted the appropriate medical/nursing care to be provided for my son and others.

After I exhausted all avenues I knew for healthcare I then approached the Human Rights Committee and outline the Resident’s rights and how they had been violated.  Again,my concerns were discarded.  I approached the advocacy group for the facility and my concerns were not a priority.  Their priority was to keep the facility open and any issues that caused concern for care were ignored for fear it would give the “opposition” more fuel for closure.

While I am very concerned about the loss of access to campus based communities and intermediate care facilities, I do not want to compromise on appropriate healthcare that at least meets the minimum standard of care.  The care my son was receiving fell far below the minimum and I’m assuming that the healthcare of others was also compromised.

Jumping forward 5 years, the problems became more profound and pervasive.  It was at this point that the facility actually “self-reported” to the State Investigative Unit since I had claimed there was neglect on the part of the healthcare team and had become so frustrating trying to work with the “team” – as guardian I was excluded from most meetings and not considered part of the team or someone who needed to be consulted or listened to.   Neglect was the key word which was taken seriously.  Unfortunately, the actions taken were again just another exercise in frustration.

It was at this point that I actually started to ask questions about what state agency actually licensees and oversees the healthcare clinic.  I learned it wasn’t actually a “clinic” but only space that each professional was allowed to use for paperwork.  There was no medical director and there was no healthcare oversight.   This revelation was a huge problem with access to appropriate healthcare for the residents.

In my audit of my son’s charts I have discovered so many medical and nursing errors in addition to errors in policies and protocols that it is shocking.  For instance in the case of 90-day medication reviews there were over 8 medications that were charted as given once or twice a day by the nurse for a period of 1-3 years. They were not given – this was false documentation.   These medications were indicated at one time but at a 90 day medication review they should have been looked at and the questions asked if they were still indicated and if not, they should have been discontinued.  Instead the nurses just kept signing off they were given  – some had never even actually been given at all.  As a nurse I find this totally unimaginable.

This is not only a problem with nursing documentation but also with pharmacy reviews and the “team” 90 day medical review.  These reviews had been signed off as being done and in some cases a medical doctor wrote “med review – no changes” when there had been significant changes in just the couple of weeks prior to the review.  If I had been notified of these reviews or a 90 day medication reconciliation form sent to me, I could have very easily have seen what problems were there.  Being left out of the team and not allowed to perform my legal duty as guardian caused many problems.

At this time, until these issues are objectively reviewed by an independent investigator and the problems actually addressed and not swept under the carpet, I cannot support these types of intermediate care facilities.  The Federal Regulations need to be followed and the appropriate care provided.  I know in the case of my son this was not happening – I hope it’s not the case for everyone.

 

Supported Living Crisis

It is absolutely necessary that we provide funding to support our direct care providers in the community settings.  We have been in a crisis situation and it is only getting worse.  It is time to step up and provide the support that we all say is needed but do not provide the funding to back the words up.

Please read the position paper Underfunding of Community Residential Services by the Community Residential Services Association.  While I do not have all the cost reports of the community service providers nor the cost reports of the state funded services to compare the cost of care, I do know that the cost of direct care for those with high support needs is about equal across the board.

It is the costs of all the other services that add up and can make one type of residential setting appear more costly than another.  It also depends on what is included in the cost reports.  I believe there is cost shifting and capital costs which may not be reflected but, again, I do not know for sure since the data is extremely difficult to sift through.  It is something to take into consideration.

Regardless of the cost issue there are other major concerns that need to be factored in. Personal Choice of residential setting, access to quality health care, continued learning opportunities, employment and meaningful life activities all need to be included in the big equation.

There is not one type of residential setting that guarantees that all these aspects of life will be met or even considered but I do believe that living close to family, friends and natural supports does increase the chance that the person will have a meaningful life that is fully integrated into community.

 

 

 

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

 

 

 

 

 

 

 

 

 

 

Preserve and build Respite and Crisis Stabilization

Time is running out – we need a YES Vote on SB 5243

 

save respite part 4 Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?

According to the Action Alert sent out by The Arc – Washington State they oppose this effort to preserve respite and crisis stabilization.  This bill is only aimed at preserving and building – not shutting down and limiting the few choices that our families have for respite and crisis stabilization.

It is time to question the motives of The Arc – Washington State and ask why they want to tear apart services.  Tearing down will only hurt those we are trying to help.

Please call the toll-free hotline at 1-800-562-6000 and ask your Senator to vote YES on SB 5243 – it is for the sake of our families!

Read the bill here and decide for yourself what is in the best interest of our families and community members in need of services.

(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

Arc of Washington State – Question their data and resources

The Arc Washington State recently sent out an alert “Crisis Stabilization Needed in Local Communities.”  While this is indeed needed, the information provided by The Arc Washington is not only incorrect with facts but much is actually fiction.

As a respected advocacy agency which many legislators and community members look to for guidance publishing alerts such as this actually hurt the people The Arc is supposed to be supporting.  Where is the integrity and transparency in their reports?

The Arc states that “On average, only 1-3 beds a month are currently used for any respite.”  The Data obtained from the Department of Social and Health Services Executive Management Information System (EMIS)  dates June 2010 through June 2014 clearly show that the Arc is very incorrect.  Below is a graph of the data obtained from the EMIS.  The average has actually been 32 respite clients per month at Yakima Valley School.

Community Respite in RHCs

The Arc states “The cost for placement in Yakima Valley Nursing Facility is $587 A DAY, much more than a community setting.”  Again, data obtained from the EMIS and from the Office of Chief of Policy and Programs, DSHS Quality Programs and Stakeholders Office Chief, and the Crisis Services Program Manager,   the cost of community crisis respite is $1,166 dollars A DAY as opposed to the average $441 at Yakima Valley School of which only $216.00 is the cost to our state when the Federal Medical Assistance Program (FMAP) is taken into account. (EMIS 2012-2014)

Respite at YVSWhen provided with the actual data, one can see that we need to pass E2SSB 5243 rather than reject it.

This bill does not address anything having to do with respite that people receive in their homes and communities and will not take anything away from them.  It will only provide much needed services and help prevent crisis and family breakdown.

Yes, we all want respite in our communities but it is not happening for various reasons.  Respite can be used for a variety of community outings and opportunities but out-of-home respite is also needed.  I can tell you that if my son had been allowed to have any out-of-home respite at all while living at home on a waiver, it may have saved our family and may have prevented him from being moved into the RHC.  I believe that out-of-home respite is an essential component of the whole respite program and will add to the sustainability of community programs.

Resources:

Data received from the Department of Social and Health Services, Executive Management Information System  June 2010 – June 2014, with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions –http://www.dshs.wa.gov/pdf/adsa/ddd/policies/policy3.04.pdf

Report to the Legislature – December 5, 2011  http://www.dshs.wa.gov/pdf/adsa/ddd/Fiscal%20Status%20Report%20Consolidation%20of%20RHCs.pdf