Essential Care Needs

Essential Care Needs Nonprofit – a new concept that can help address the growing crisis that will only get more acute over time.

The crisis is only getting worse and rather than trying to work within a system that was developed almost 40 years ago, we must look at our population and circumstances now and in the future with new alternatives to meet the needs of our community members.

It has become even more clear in times of COVID there are Essential Care Needs that need to be addressed and funded – for the benefit of our whole community.

Supported Living Agencies, many that are already non-profits, and other advocacy groups should address the issues of development of the Essential Care Needs Nonprofit.

Now is the time!

Start video at 12:00 for information regarding Essential Care Nonprofits
ECNs would be a new form of nonprofit entity serving the essential care needs of the rapidly growing population of indigent adults unable to care for themselves.
ECNs would be a new form of nonprofit entity serving the essential care needs of the rapidly growing population of indigent adults unable to care for themselves.

Apart from the genetic toxicology of autism, my other passion is finding ways to reform federal policy to unleash capacity in supports, services and housing for the burgeoning population of adults disabled by autism.

One idea is creation of a new form of federal nonprofit entity, the “Essential Care Nonprofit” or ECN.

ECNs would be a new form of nonprofit entity carved out for special federal tax (and other) treatment because they provide basic daily-care needs to the most severely disabled. The lack of these agencies and programs across our country is appalling and inexcusable. The need is growing rapidly, especially in the realm of adult autism, where the population is expected to grow 5-fold (at least) over the next 20 years.

Two links sharing the basic concept of the ECN:

From: https://www.jillescher.com/

For more information visit:

National Council on Severe Autism – https://www.ncsautism.org

Together for Choice – https://www.togetherforchoice.org/

Better and cheaper?

There has been an ongoing investigative series entitled “The Last of the Institutions” on King 5 News by reporter Susannah Frame in Seattle, WA.

As an advocate for choice and appropriate supports for people with intellectual and developmental disabilities I have been greatly troubled by the continued misinformation that was presented in what I consider to be extremely biased reporting.  When I first learned of this investigative series I was hopeful that some of the myths that have morphed into “facts” would be proven wrong.  Ms. Frame was provided with much factual information from reliable sources but she chose to ignore them and continue to fortify the myths with more of the same misleading and incomplete information which has been the basis of this argument for many years.

During the past 6 months time that the series has aired I have had the opportunity to move my son from the RHC to a supported living home.  Also interesting to note the reasons cited on both “sides” of the issue were the opposite reasons of why we made this decision.  During this transition I have also verified that the cost of care for those with high support needs is as much or more in a community setting than in the RHC – but the costs are hidden due to various budgets providing different supports.

We did not move our son due to being segregated at the RHC.  In fact, he is so well connected in the community that whenever he goes out he runs into people he knows.  He has a supported employment job at a local hardware/garden store 2 hours each weekday morning and is a frequent shopper at the nearby grocery stores.  He is a frequent participant in any local music or community event and has attended weekly mass at the same church he has gone to his whole life. He sees many of his student peers from his high school in the community as they get jobs at various local restaurants and other stores that he regularly frequents.  He was far from segregated!

In addition to the community at large, he loved his campus community.  There was always a new person to say “hi” to and get to know what country they were from.  He loved memorizing people’s schedules and asking them what they are doing.  This constant interaction with others coming and going is something that he will miss moving from a campus community.

But, contrary to what we hear about comprehensive care at the RHC we did not experience this for his care.  The “team” did not include us (parent/guardian) in discussions about care and they refused to listen to us about our concerns.  We were constantly trying to work collaboratively but continually being denied the opportunity to do so.  We were even denied multiple requests by us to teach the nursing team and personal care staff how to appropriately do some of his care treatments being told that we are not allowed to teach them.  At one point the superintendent told us that there are “team decisions and then there are medical decisions” meaning that they saw no need to include us or listen to us about medical/nursing concerns.

It was ultimately this refusal of the medical/nursing team and their sub-standard care that led us to seek an alternative.  Given how the system works the MD who is at the RHC needs to write all the orders for the nurses to be able to give the medication or treatment.  The recommendations by my son’s medical specialists in several specialties were not followed by the MD (although no discussion or conversation occurred to inform us that the specialists recommendations were not going to be followed) at the RHC and therefore my son was denied the prescribed treatments.  This led to many problems and issues of neglect of care for which he will have life long complications.     The community standard of care was not maintained (at least in our experience) by the medical/nursing team at the RHC.

So it was in search of quality medical/nursing care with providers who would work with us that  led us to seek a different setting for our son to live in.  It took over a year to find an agency that could accommodate his needs and also a home that is in our community but we succeeded and he moved in the middle of March to his new home.

We just received the notice from the Developmental Disabilities Administration regarding the cost of care (from their budget) for our son.  DDA will pay the agency $418.15 a day and a delegating RN $26.58 a day to provide delegation services.  My son needs to pay his own rent (from his SSI and rent subsidies) and utilities, he will have food stamps to help with the purchase of food and his medications, medical supplies, physician services and other medical costs will be covered by our insurance and Apple Health Care.

So while this may appear less expensive when only looking at the DDA costs, overall it is more expensive for the state when looking at all budgets included in providing care to those with high support needs.

But this daily cost of care is not the whole story either.  The quality of care provided by the Direct Care Staff, Agency RN, Health Care Coordinator, Program manager and others involved in the agency team is far above that we experienced in the RHC.  The continuity of daily staff has already greatly improved his day to day care.  Issues of concern are readily picked up on and taken care of.  The integrity of the program is high and the people we are involved with are conscientious about their jobs.  There is more opportunity for individualized attention and care which helps to promote health and learning.

The policy in the RHC was to rotate staff daily thereby prohibiting any one staff person from being able to see trends that may be occurring and making it very difficult to communicate needs and have follow through. When I had an issue that needed to be corrected the manager denied that there was a problem – if there is no acknowledgement of a problem there could be no solution.  Hence, we had years of the same issues continually repeating themselves with no resolution.

I continue to support the RHCs and campus communities realizing that everyone has different needs and we need to have resources to accommodate all types of people.  The RHC did not work out for us in the long run but it was a lifesaver for several years.  We need to continue to support this option for those who need it and for those who choose it.  If we deny these services we are essentially promoting negligence of care.

“Institutionalization” is not always the wrong answer – it’s often not the first choice or a choice for everyone but it is the right choice for some and we need to honor that.

Last of the Institution Series letters to S. Frame