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?

 

 

 

Where is the choice? Where is the person-centered care?

The historic Olmstead Decision  “affirmed that the ADA requires states to provide services for people with disabilities in the “”most integrative setting appropriate” and that states are obligated to place people with disabilities in community settings when treatment professionals determine such settings are appropriate, the individuals themselves do not oppose such placement, and the state can reasonable accommodate community placement given its available resources” (Lakin & Stancliffe, 2007) (OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), 1999)

Washington State is practicing way outside these boundaries by passing laws prohibiting supportive community services to those under 21 regardless of the person’s assessed needs which may require intensive supports available ONLY in the supportive community.

Where is the choice?  Where is person centered care?  It is certainly not being practiced in the case before an Administrative Law Judge this week.  Read the case below, read the choices of the family, read the recommendations of the professional experts – all which indicate this 19 year old young man is stable, safe and has adapted well to his home in a supportive community.  Developmental Disabilities Administration (DDA) is continuing to deny long term admission to the chosen community where this 19 year old has lived for over one year.  DDA is using Roads to Community Living and a recent Washington State Law denying him permission to stay in his home while attempting to “build a home around him” in the community.

 

He already has a community where he is safe, stable and one which his family/guardian and care professionals agree is the best option for him in the least restrictive environment for him and one in which he is happy.  Where is the Person-Centered Care in the actions that DDA is taking?

Jack was admitted on “short term stay” in June 2012.  Jack transitioned very well, his medications were adjusted, he has 1:1 support, he has freedom to move about, he attends a local public school, his family is nearby and engaged, and Jack is happy.   Jack’s family has looked at over 10 “community” homes in the area, none of which would provide a safe environment for him.  Administrators in several Supported Living Agencies have told the mother that they would not be able to manage Jack with his needs.  The local Medical Expert in Autism who had managed Jack’s care prior to the short term stay for stabilization wrote that he had “run out of treatment options” for Jack.

When the short term stay was nearing 90 days, Jack’s mother was informed that Jack needed to leave this community.  Jacks mother had already seen there were no safe alternatives for Jack elsewhere and having already run out of treatment options by the experts in the community and fearing for Jack’s safety, she requested that Jack be allowed to be admitted on a long term basis to the supportive community which had served him very well.

Jack was denied.  An “exception to rule” was requested – this was denied.  Jack’s mother requested an administrative hearing.  After the hearing, the Administrative Law Judge stated that she did not know enough about the law to make a decision at that point.  She requested DDA to submit a proposal for supported living for Jack, share with the mother who would then write her comments, concerns and her proposal, which would then all be submitted to the judge.

The Administrative Hearing Manager wrote she objects the submission by Jack’ mother and has requested a post-hearing conference to discuss the Mother’s submissions.

It must be emphasized that Jack’s mother‘s concern is Jack’s SAFETY.  She has made this perfectly clear.  The Administrative Hearing Manager asked Jack’s mother “don’t you think you are asking for too much?’ to which Jack’s mother replied “Is Jack’s safety too much?”

Again, where is the choice?  Where is the Person-Centered Planning?  Where is the common sense? Where is the compassion?

 

To be continued. . .

 

Bibliography

OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), No. 98-536 (Supreme Court of The United States June 22, 1999).

Lakin, K. C., & Stancliffe, R. J. (2007). Residential Supports for Persons with Intellctual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 151-159.