Tag Archives: ICF/ID

Entitlement?

We hear over and over that the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) is an entitlement – but what does this mean in real life?

One would think that if something is an entitlement that it would be there for you when you needed those services   Not so with the ICF/ID and in the state of Washington, the ICF/ID is not available to you if you are 21 or under.

Recently I had a conversation with an executive director of an adult family home which is licensed for adults with developmental disabilities.  In talking about the experience that our family  went through in order to have our son admitted to the ICF/ID for lifesaving care,  this person was horrified.

She had heard that the ICF/ID was an entitlement and was very confused by our story.  She had no idea of the struggles and crises that most families and individuals have survived in order to be lucky enough to utilize this “entitlement.”  She then stated that she needed to hear these stories because she had believed that the ICF/ID was an entitlement not realizing that it is really far from that in real life stories.

Listen to the stories of families who are the survivors.  Of the many, many families that I have had contact with and of the stories I have heard, not one has had the ICF/ID offered to them as an entitlement.

In fact, after a long meeting with my son’s case-manager and the Children’s manager for the Division of Developmental Disabilities to discuss discharge planning from one of his many prolonged hospitalizations, I overheard the DDD manager say “Don’t offer them anything!” as I left the meeting.

What they did offer was for us to call 911 for his next crisis since the Regional Service Network Administrator had indicated that he would not approve another admission for our son since “he was not improving with treatment.” Doesn’t that mean that he needs more help and maybe ought to be able to take advantage of his “entitlement?” DDD didn’t think so.

Obviously with respect to the ICF/ID, the definition of “entitlement” is different and does not mean a guarantee of access to benefits based on established rights. It seems to mean fight until you are almost dead, endure abuse, be jailed, or many other horrible scenarios before you may be “entitled” to access appropriate care in the ICF/ID.

People need to know the stories of our survivors.  Please share yours.

 

We “institutionalized” our son at age 15

Before you condemn me for this decision and tell me that we could have done something else, I would like you to read my statement below.

Unless you have had a shared experience, you may not understand what families such as our face in trying to manage our kids safely at home with few, if any, adequate supports.  I believe this situation will get worse before it gets better since many will have to experience this to understand the mistakes they have made in advocating for closure of institutions which provide comprehensive and safe care to our most vulnerable citizens.

First, I will make one assumption and then state 2 facts.

Assumption:  we all agree that stability and sustainability are better than chaos and crisis.

Fact 1:  Community Intermediate Care Facilities for people with intellectual disabilities (ICF/ID or ICF/DD)  in Washington state do not have nursing or nurse delegation available for the residents.  This means that for a resident to live there they need to be able to self-administer all their medications.

Fact 2:  Insulin is one of 5 “high risk” medications in a hospital setting.  This means that Register Nurses in a hospital setting need to double check the dosage prior to administering insulin to any patient.  In community homes for people with intellectual disabilities, insulin injections are the only injectable medication that a non-licensed provider with nurse delegation is allowed to give.

I recently attended the 33rd Duncan Seminar at Seattle Children’s in Seattle, WA.  The topic was transitioning our special needs pediatric population into the adult world.  One pediatrician spoke, and though very engaging and informative, he stated “or you could just drop your kid off at Fircrest”.  Fircrest is one of our state’s 4 remaining Residential Habilitation Centers (RHC).

This is my letter to that pediatrician informing him of his error in judgment.

Dear Dr. ______

Thank you for your informative presentation at the Duncan Seminar.  As stated above, I greatly appreciated your information and sense of humor.  There was one comment you made though which I feel I need to address.  You stated “you could just take your kid and drop him off at Fircrest” or something very close to that.

My 18 year old son lives at Fircrest and we didn’t just go and “drop him off” there.  Our son has a genetic (most likely some sort of metabolic neurodegenerative disorder – geneticist and neurologist are still working on it – The Mayo Clinic and Emory Lab see  “something” in his genes but cannot yet pinpoint it) neurodegenerative disorder which causes not only Intellectual Disability but manic and psychotic episodes.  We are very involved in his care and he is very active in community events but Fircrest provides the stability and constant personal interaction which our son requires to maintain his orientation to this world.

We never imagined that we would place our son in any type of residential setting – in fact we even kept him home for birth-three since we didn’t want to “institutionalize” him and separate him from our family.  I believe to this day that it was the close interaction with me and our family in his early years which has helped him tremendously with his social and language skills.  We never thought he would walk or talk.  Actually, sometimes we wish he would now stop talking since it’s literally non-stop but if you ask him to be quiet he yells “I know how to talk!”

When the manic and psychotic episodes started and the crisis cycles started with multiple prolonged hospitalizations we and his care team knew that we needed to find a residential placement for him to keep him safe.  We found that there were no facilities in the area which were adequate – the IPU at Seattle Children’s, though able to work with his mania/psychosis were inadequate in working with his DD issues – even with 1:1 support they did not understand how to manage his personal needs (diapering a 14 year old for instance).  He was admitted to Swedish on the pediatric floor due to complications from dehydration/extreme weight loss from a manic/psychotic episode.  He was still manic with hallucinations and psychosis but also needed additional medical care. We were told to keep him in his room because he was scaring the other kids – this was literally impossible without scaring them more from hearing his screams from being confined.

After his 5th hospitalization in about 1 ½ years he had to be readmitted 3 days after discharge.  We sat in the ER for over 12 hours with the psychiatrist, social worker and nurses from the IPU in addition to the 1:1 security presence, trying to convince the RSN, who is the gatekeeper for hospital psychiatric admissions, to admit our son.  Finally, he was allowed to be readmitted but we were told the RSN would most likely not approve another admission because the treatment plan wasn’t changing and there was nothing else they could do for him.  That was absolutely true but it was the only safe place that we had for him and our family.  At the discharge meeting when I asked what we were supposed to do with the next crisis, the only solution was to call the police and take him to jail.

Our son was 14 at the time, was on a HCBS waiver and we and his treatment team had already requested placement at a group home or Fircrest.  DDD denied all these requests but told us to call the police.  This was a totally unacceptable solution to the issues at hand.  Luckily, we connected with a psychiatrist who understood us and our son.  She worked directly with us in trying to maintain our son at home.  This arrangement was supposed to be temporary while our son was on the “waiting list” for residential placement.  I inquired each month how the process was proceeding and was told “we’re working on it.”

Luckily, or unluckily, I sustained an injury which required surgery from caring for our son.  This then led to multiple life-threatening complications for me, my own cycle of hospitalizations and surgeries which then led to more crises for our son.  After 9 months of this, we found out that DDD had lost our son’s paperwork.  Due to my own health crisis and the deterioration of the rest of our family, we were able, with MUCH added stress and work, to have our son placed at Frances Haddon Morgan Center in Bremerton.

This was the best that DDD could do.  They had stated that our son (while in crisis) would have to go to Yakima first for “respite” then be transferred to FHMC.  We were able to talk them out of the Yakima stay and get him into FHMC.  This move saved his life and mine.  After a year and with many letters explaining the other health issues with me and my other children, we were able to have our son transferred to Fircrest – the RHC he should have gone to from the very beginning given that we live in the U. District and he has lived in North Seattle his whole life and knows Shoreline like the back of his hand.

Since moving to the RHC our son has been stable and has not needed to be hospitalized.  The RHC has the support staff that can provide stability and the constant personal interaction he needs in addition to managing his ADL’s and personal care.  Our son is very happy and loves his home and community.  I know many parents and family members of Fircrest residents who have similar stories and experiences.  The families today who need the services of the RHC are much different than years ago when people were left there and forgotten.  Yes, there are people there who do not have family or friends visit but the with the younger population, this is not the norm anymore.

I know that for our son a group home would not be safe for him.  The rapid staffing turnover and lack of back up for staff leads to safety problems which could be life threatening for our son and others that I know.  I believe that many developmental disability advocates have done a great disservice to our DD population by advocating for closure of institutions.  I wholeheartedly agree that this is not the first option nor is it the most appropriate option for most of the population but for the people who are there, it is the least restrictive and safest choice for them and their families.

Many people fail to understand the issues of dual diagnosis in our DD population.  For our family it was the onset of mania and psychosis from early onset dementia which led to us needing to think about placing our son outside our home.  Mental illness is difficult for those who do not have a developmental disability so just imagine how much more difficult it is to manage in the DD population.

We did not “just take our son to Fircrest and drop him off” because we didn’t want to care for him.  He is there for stability and his health and safety for the health and safety of his family. I think that we would all agree that stability and sustainability are much better than crisis and chaos.

Again, thank you for your presentation.  If you are interested in a tour of Fircrest to see what the institution is like today, I would gladly take you to visit.

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Where is the accountability?

I am writing with concerns that I and many others have regarding government accountability.

Much of this has stemmed from the passage of 2SSB5459 last year and the more that I research and uncover through public disclosure, the more I am frustrated by the lack of integrity and accountability that some of our state’s agencies and legislators allow.

This is a very complicated and convoluted mess now and it is highly charged with emotions of people with various ideologies. What is consistent though is the monopoly of decision making by one entity and the censorship which that entity uses so that others with information are not able to present to the public concerning issues which may not support the position of the reigning “expert.”

I am referring to issues regarding care of our most vulnerable citizens. The Department of Social and Health Services (DSHS), The Division of Developmental Disabilities (DDD), The Developmental Disabilities Council (DDC), Disability Rights Washington (DRW) and The Arc Chapters – which actually have a monopoly on almost all social media and groups that have issues pertaining to people with developmental and intellectual disabilities – all have an agenda which they push and utilize false, incomplete and inaccurate data and reports as “facts” in order to gain agreement with their agenda from others.

Logically, I could not see how what they were saying could in fact be true and I started to do my own investigation of data and reports. I have gathered much information through public disclosure and by looking at the original sources; it is clearly evident that the above mentioned agencies are choosing not to look at the data accurately. Any attempt to have accurate data shared is censored and people are not aware of the inconsistencies and inaccuracies that those agencies promote. Due to the inaccurate reports that the above agencies are using, our legislators are making critical decisions that are not based on the accurate data.

Many people are being hurt by these decisions and in fact we have already had one death this year solely due to the passage of 2SSB5459. It is time to stop and take a look at the practices of these agencies and question why they are promoting policies that actually hurt the very people who they are set up to protect.

I have contacted Washington State Institute for Public Policy (WSIPP) regarding some of these issues also. The author of the last report which WSIPP published responded to me that yes, I indeed did have some critical information that needed to be considered but they are only able to do research if directed by the legislature. The problem is that so many of our legislators listen to the above stated agencies’ as the experts and will follow their instruction and recommendation when in fact that is part of the problem.

We need to have an outside entity look into these issues – an independent group which can look at the facts without needing to support an ideology. I have attempted to do this with research but since I am only one person and am reporting information which does not necessarily support the approved ideology, I am censored and silenced. It is extremely difficult to have people look at this information since this issue has gone on for so long and people are most likely sick of it being repeated.

I can tell you from looking at this issue without the ideology one will see a very different picture than the picture painted by the “experts”. Looking at the budget figures alone, the support needs of the residents (as reported by the individual residential agencies themselves) and taking information from DDD and DSHS reports, it is clear that there is a continuum of support needs and as a person has increasing needs, their cost of care for direct and indirect support needs increases. The place of residence does not affect the cost of direct care.

The other issue that will be seen is (as reported by the agencies themselves) the support needs of most residents in the community residential settings do not come close to the support needs of the residents who choose to live in the Residential Habilitation Centers (RHCs). The “experts” will deny this and reference the report “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” by Barbara Lucenko and Lijian He dated February 2011 (http://publications.rda.dshs.wa.gov/1432/)

The report referenced above is a perfect example of manipulating the data to fit the ideology even though the data collected in the research did not support the ideology. The data was collected for three different residential settings: Residential Habilitation Centers, Community Residential and Other Community Residential. The data clearly showed statistically significant differences in supports needs between residents in all 3 settings. The author of this report chose to collapse the three settings into two for the “Key Findings” and proceeded to state “Residential Habilitation Centers and Community Residential” and “Other Community Residential” were the two settings. This manipulation totally changes the outcome of the data and this was done in order to support a particular ideology which the data itself did not support.

There are other issues regarding how 2SSB5459 was passed into law. There was a public hearing (with only 20 minutes notice) May 18, 2011. Rule 45 was suspended for this meeting so that bills could be heard without 5 days’ notice. I do not see any written notes regarding the reason for this rules suspension. This public hearing was to be on SSB5459 yet as the public meeting was commencing (again with only 20 minutes’ notice) it was stated that there was now a new substitute bill that was just at that moment going into the Electronic Bill Book.

 How can there be public testimony on a bill that is not even available yet?  Also, it states in the bill history that the First Reading of 2SSB5459 was on May 19, 2011 – the day after the public hearing. Why is the path of 2SSB 5459 allowed to take this very unusual and undemocratic route to passage of this bill?

I have much more information regarding costs, health and safety, quality of care and support needs. I would welcome the opportunity to be able to share this information with people in hopes that some of the decisions that have been made based on information only supporting one ideology can be looked at with a more objective perspective.

Please contact me for information regarding costs reported by agencies, DDD Reimbursements to agencies, Support Needs Index of Residents and cost shifting.

Thank you,

Cheryl Felak, RN, BSN

We are Survivors – Please Support HB 2581

Please support HB 2581

 

We are survivors!

 

Much like the camaraderie people develop after living through harrowing experiences, families of Intermediate Care Facilities for People with Intellectual Disabilities ( ICF/ID)  residents also develop a bond through similar life experiences.  These families have survived crises much on their own, isolated from the mainstream life, many times holding the life of their child or sibling in their hands.

 

Only through the life sustaining and life enriching relationships and services which the residents experience in the ICF/ID, their families have finally found others who live in their same community.  Many of these families have developed camaraderie from having similar life experiences of surviving crisis after crisis.  These families know that the life of their loved ones is only supported by the community at the ICF/ID.

 

In these times of self-advocacy, person centered care and personal choice, why are some people saying that they know better than the very people who have survived?  These residents and families know how close they have come to life’s perils and have chosen to live in the ICF/ID community.  No one is forced to live there but there are many who are not able to make this choice to live there due to the ideology of those who “know better.”

 

It has been proven over and over again that the cost of these residents with their intense and complex support needs are higher than the “average” person with an intellectual disability.    Their care is expensive no matter where they choose to live but their care can be better managed in a safe, quality and cost effective manner when they choose to live in a similar community and utilize the same services.  Moving these residents will not minimize their support needs – moving them risks their lives, relationships and community ties.

 

Please allow these residents the same rights and choices as all others in our society.

 

This is for Tommy – We Care!

Stop The Harm – Look at the accurate data

Stop the Harm

Support A Continuum of Care

Family Homes – Respite – Crisis Care – Fircrest – Rainier -

- Supported Living -

Lakeland Village – Intensive Tenant Support - Medicaid Personal Care -

- Family Support – Home Ownership -

It is time to stop and think about what has previously been believed.  Many hear that people with intellectual disabilities with the highest support needs can be served in the “community” at a lesser cost than they are cared for in the Intermediate Care Facility or People with Intellectual disabilities (ICF/ID) and that by closing and consolidating the ICFs/ID there will be a windfall of savings which can then be used for more services.

This is a totally false assumption that is not  based accurate data.  The chart that I have attached is based on reported data from various sources which all point to the issue that the higher the support needs of a person, the higher their cost of care.

The  data taken from the Division of Developmental Disabilities, the Department of Social and Health Services, Internal Revenue Services, Certified Cost Reports submitted by individual agencies reporting the support needs index (average hour per resident day), the Support Intensity Scale Assessment, the CARE assessment all agree with the fact that a person with higher support needs has a higher cost and for those particular residents their cost of care is actually more  cost effective in the ICF/ID than in another environment.

What is particularly troubling is the continued inaccurate reports that are used to support false claims.  One of the major reports which came out last year was “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings.” http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf.

The author, Barbara Lucenko,  states the residents in the  “RHC and community residential” have  the same support needs.  This was written in the “Key Points” of this report yet that conclusion was not supported by the data in the actual report. The actual report had three categories of residents:  Residential Habilitation Centers (RHC), Community Residential and Other Community.  There were significant support needs differences reported between RHC and community residential yet Ms. Lucenko chose to combine those two categories in her summary

“Support needs are higher in most general life tasks, such as daily and community living activities, for DDD clients served in RHCs and community residential settings than for those supported in other community-based settings.”

This statement is inaccurate and misleading to readers of the report.  One can also see from this data collected by the agencies themselves, the support needs of the ICF/ID resident and the residents in community settings are very different.  I have attempted to contact the author of this report several times to question this inaccuracy, she has never responded.

Cost of care as reported by each agency and DSHS payments to each agency based upon support needs of residents

Cost of Care by Reported Support Needs of Residents

I AM BIASED

Yes, in answer to those who accuse me of many horrible things  - I am biased - biased towards safe, quatlity and cost effective care for our citizens with Intellectual Disabilties.  What I find funny in an ironic way is that some of these people accuse me of the exact opposite of what I am doing.  I often wonder where they are getting their information or where they learned their math and logic because they just don’t make sense.

I do not think that people or systems are prepared to care for people with the highest support needs.

I feel like a broken record in trying to communicate and break down walls of those who have been led down the wrong path by brainwashing.  If people would stop, listen and think, I believe that we could come up with a system that really does support a continuum of care – a system which best serves each individual with their assessed support needs in a safe, quality and cost effective manner.  I’m afraid to say though that until the propaganda is questioned enough and people begin to hear other opinions and issues, it may be long haul for us.

I only hope that no more innocent people will lose their lives while we are trying to figure it out.

Cost of Care by Support Needs, nursing and some medical care included

DD EMIS Data for Home and Community Based Service Waivers

 

 

 

The Almighty Dollar more important than peoples’ lives?

Below are excerpts from letters that I have received by those who make profits from residential services.  I understand the attacks against me since he views the accurate data being presented from original sources as a threat to his livelihood. 

What I would really like him to consider is the threat to the lives of those less able them him who will have all funding and resources cut if this data is not looked at accurately.  He is refusing to do that but instead throws arrows at me by saying the data is  manipulated.  The data is presented exactly how DDD records it in their records, how the agencies themselves report it to DDD and how the agencies themselves report to the IRS – hardly manipulated on my end. 

This CEO has clearly not read the reports nor is he aware that most of my research is geared toward improving the quality and safety of  care to those who do not reside in the RHC and to also bolster services and resources to people in the community at large.  His fear and anxiety about true data being exposed is clearly evident in his attacks.  It’s interesting that he does not counter-present with facts that would indicate what I have is incorrect  – I assume that is because those “facts” are non-existent. 

“I will not be communicating with you in the future as it is obvious that you are unable and/or unwilling to support community services, which is evidenced by your focus on presenting deliberately misleading data to state personnel and legislators.

Your lack of knowledge and understanding of services and funding is glaringly apparent in one report that you posted in which you claim that the “Cost correct for Resident Acuity” is over $850 per person for the Arc of King County, while you list the RHC costs at or below $200.  I fully understand that you are the parent of a person that resides within an RHC, and that you believe you are advocating for all people who experience an intellectual or developmental disability to have access to a continuum of care.  However, your approach plays as one-sided, is immensely inaccurate, slants towards de-valuing community residential services, and does notsupport a continuum of care.

Your continued efforts on a daily basis to distort the truth and inflate the data to present community services as more expensive sends the erroneous and destructive message to decision-makers that services can be further cut.  You are playing a dangerous role in your efforts and as such, I ask if you are even aware that your efforts will lead to further erosion of community services for people with developmental disabilities and will have grave and serious impacts upon those individuals who currently live independently in the community with community residential supports?

With regard to the data you present, I wanted to make some corrections.  It is important to correct these inaccurate figures since one of the reasons that we continue to face cuts is because individuals and organizations present data that has been either incorrectly calculated or misrepresented to somehow convey that community programs are more expensive, therefore being overfunded.  By presenting reports that state community programs are expensive, it sends the message to legislators that we should be cut.  This is part of the reason why we are in this crisis. 

Alpha Supported Living Services’ costs, on average, are above the average because 1) we are located in King County, which has the highest cost of living and therefore highest benchmark funding, and 2) we serve some more challenging individuals so our costs are higher than the average acuity level.  For example, over 40% of the individuals supported by our agency formerly lived in an RHC, 33% have a diagnosis of Autism, and approximately 40% have an accompanying mental health diagnosis.  As such, our costs are higher than the average due to acuity levels. ”

This last point regarding costs are higher for higher acuity is one example that I have been trying to communicate – it is good to see that he recognizes that fact here but when speaking to legislators and the public, that would not be addressed.  As an example the attached graph indicates the cost of care as reported by each agency with respect to their reported “Average Hours per Day for Resident Care” – a measure that indirectly looks at client acuity.

Cost of Care chart with hours per day as reported by each Supported Living Agency

It is interesting to be aware that the average cost of care reported by DDD is $6400.00 a month.  This average cost is equal to about 11 hours per day.  On this chart, the highest reporting agency had 21.65 hours at $10,816 per month and the highest cost agency reported 18.22 hours per day at $15,620 per day. 

Another VERY critical issue is that these reported costs DO NOT include medical, dental, nursing, psychiatry, prescription medication, therapies, education, vocational training, habilitation, FOOD and RENT. 

My message as an advocate for a continuum of care is that these residents with high support needs are EXPENSIVE to care for no matter where they live.  It is more cost effective, safe and less restrictive for many of them to live in the RHC.  These are the FACTS – no manipulation, no inflation, only the facts. 

This is the information which needs to be shared and understood – when people try to cut corners and under-report, people die.  We have seen this happen already this past year. 

The Stand Opinion

Thomas is in VOR National News

Thomas has made national news reporting -

 He was featured in the VOR weekly update.

The Face of VOR

4. Thomas’ Story ——————————————- By Cheryl Felak, RN, BSN * Seattle, Washington * Dec. 31, 2011

Related Audio: From Crisis to Stabilization – Thomas’ Story  

   Thomas is my son. He’ll be 18 years old in February 2012. He has an extremely rare genetic disorder which is neurodegenerative and has early onset dementia. Throughout his youth, he has had many prolonged hospitalizations in the inpatient psychiatric unit at a children’s hospital.  Due to his developmental disabilities, they really didn’t know what to do with him.  They didn’t know about personal care. When he was 14 years old, he came home from one hospitalization with such extreme skin breakdown that it took about 5 months to clear up.  Even with a 1:1 aide in the hospital setting, they were not able to provide for his personal care adequately.  I would often arrive to see him with food on his face, food down the front of his shirt, teeth not brushed or a diaper that needed to be changed.  In the hospitals the staff are not trained to care for DD patients and particularly on the psychiatric floors where children who are dually diagnosed (mental illness/developmental disability) tend to be hospitalized.

    Thomas now lives at Fircrest, the Residential Habilitation Center (RHC) (a state ICF/MR and specialized DD Nursing Facility) near our home.  It has been a Godsend, although he was denied admission for about a year. The State’s Department of Developmental Disabilities (DDD) claimed that there were no resources for him (even though he was on a Home and Community Based Services (HCBS) waiver). Before his admission to Fircrest, DDD suggested that for the next crisis we would just have to call the police. 

   Since moving to Fircrest, he has not had to be hospitalized once and has been stable. He is so happy in his home. It has also allowed our family to regroup since our family disintegrated and my health also became life threatening in efforts to manage Thomas at home.  We have also had to file for bankruptcy.  Moving him to the RHC has enabled us to work and become productive members of our community and also be advocates for other families who are in the shoes we were in and are in.

   When Thomas was 14 years old and living at home, I recorded him during a typical manic/psychotic episode – typical for Thomas; typical for others dealing with this. During such episodes, everything becomes intense and all-consuming for the caregiver to maintain the health and safety of the child. During the episode I taped I was trying to get Thomas to go to the bathroom prior to leaving for the day camp, which he really loves. You’ll hear screaming, disorganized thought patterns, and Thomas hitting and biting himself during this taping.  I hope this audio helps people (citizens, advocates, legislators and policymakers) to hear what life is like for many of us when our child is home.

   The audio was also in response to a question by the Executive Director of an Arc chapter who asked me, “If RHCs are so great, why we don’t see people in Olympia testifying how much they LOVE living there?”

   This comment alone tells me that The Arc advocates do not understand the issue of the ICF/MR residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip to Olympia, may not tolerate crowds, may not be able to maintain appropriate behavior skills for very long or may be too medically fragile to travel.

  Thomas has taught me a lot in our journey together. I’m motivated to maintain the good, compassionate home he now has at Fircrest.. I’m motivated to help others.  I founded “Because We Care – Beyond Inclusion” as one way to help.

A Father Speaks

Who are the experts with regards to disability advocacy?  I believe the experts are the people who are involved with, love and care for our most vulnerable citizens.  These people are the families and caregivers.  The experts are not the ideologues that sit in offices thinking up ways in which they think our citizens should live.

Here is a letter from one of our experts – a father: