REFUSED RHC ADMISSION ?

SHARING OUR STORIES

Washington State's Residential Habilitation Centers (campus-based communities with comfortably adapted homes) provide centralized services to people with developmental disabilities/intellectual disabilities. For the most part, their residents are people whose needs for care and close attention are high and who have severely limited abilities to function independently. 24-7 care, nursing, dietary, a full range of therapies + medical, dental, recreation, work programs and school (public or on-campus) are provided as called for in the person's care plan.

Regular, federal audits by high standards, tied to federal matching funds, & close supervision of well-trained staff results in high quality care and programs with low staff turnover (continuity of care and relationships).

Planned respite for families caring for their loved ones at home as well as very successful crisis intervention and stabilization for general community residents (safety net) are also functions of RHCs. It is not unusual for people entering RHCs under those circumstances to request to stay on permanently. DSHS strongly discourages this, but legally, as I understand it, the choice belongs to the resident, not the state.

"Supported living" programs in the general community also are supposed to provide what the individual's plan calls for. Such services are "a la carte," generally accessed from private, for profit or non-profit business providers. Reportedly, this works out very well for some and less so for others.

If, as doubtless she will, the Governor signs into law 5459, it is possible that the number of RHC beds will begin to shrink. As I understand it, that is the plan. Partially, the rationale that has been given is that parents and guardians prefer community-based services. We know that many do, especially those whose childrens' deficits are supportable with the resources provided in the schools and medical facilities such as Children's Hospital & Universities. From time to time, though, we hear from parents/guardians whose children are outgrowing the families' abilities to meet their needs. They tell us that they have not been able to access acceptable resources, and when they have asked about RHCs, they have been told there were no beds. In some cases, we hear that they have been redirected to community living situations or left with nothing. We also hear from caseworkers that they have been directed by their superiors to steer people away from the RHC option.

To the extent that such clients of DSHS have been qualified for RHC level services ("on waiver") and have been diverted, this is a violation of both the ADA/Olmstead and Medicaid law. Anyone who has obtained paid services from a private residential business or SOLA (state operated living arrangement) qualifies for RHC level services. And some who have not obtained those services may still qualify.

If you are a person looking for resources and have not found them forthcoming from DDD or if you finally did receive the needed services but had to fight for it, it would be helpful to hear from you about your experience.

You can write to me privately at ddexchanges@gmail.com. Such mail will be strictly private. Please include a name. You may use a pseudonym if you are more comfortable, but know that I will not be sharing whatever name you use without your written permission. At this point, I am just trying to get an idea of the size and nature of the problem.

If you choose to blog, here, about your experience, others may also relate and we may find there is more participation as others see their experience shared. Either approach would be welcome.

Also, please spread the word. We must support each other in accessing and keeping open services that are supposed to be available by law.
Saskia

Advocacy Concerns

This is an abbreviated version of an open letter to people who oppose inclusion of Residential Habilitation Centers (RHCs) in the continuum of services for our family and community members who have disabilities. I felt the need to write it after receiving an extremely misleading Action Alert opposing HR 1255 (HR1255 provides a process by which parents & guardians, on behalf of their children/wards, may opt out of class action lawsuits with which they disagree.) Also, I found the documentation they provided in response to my questions to misrepresent the Supreme Court Olmstead Decision. Actually, "Olmstead" does not say that anybody is required to live in a specific place. Instead it affirms the right of an individual to live in the setting that best suits him/her - be it a private home, group home, institution. In so doing, it affirms the role of institutions within a full continuum of care.

I respect the energy and commitment that you all have to your causes. What I don’t understand is how, as strong advocates, (personal and representatives of public agencies) , you can work to deny or diminish services to people with such severe and complex needs within the DD population. I could never envision closing RHCs because I see the necessity for their existence. If you actually went, toured, met and spoke with residents, family members and guardians, you would see that each RHC is a community as well as the community of choice and safety for many people. I believe you would come away recognizing their critical role in our community.

Trying to take this choice away appears to dismiss their residents as not worthy of being safe. I saw this even before our son was in need of the services. When he was eleven, I would not have considered institutional placement for him but I would not have cut that option off for those who needed it. I realize that there is a wide variation of needs and just because one person with DD does not need those services, it does not mean that no person with DD might need them.

As our children age and change, different issues arise. As a parent who has lived through it, I can say that a dual diagnosis changes the whole scenario of needs. Care and supervision for safety becomes extremely complex, demanding and person intensive.

The estimate of the incidence dual diagnosis, (dual diagnosis is developmental disability and a mental illness diagnosis) is between 30-50%. (NADD – An association for persons with developmental disabilities and mental health needs www.thenadd.org). Often in speaking and advocating for people with DD one forgets about this extremely extra complex group of people.

Our son is very active in community events both inside and outside of the RHC. He is a well known participant in the Seattle Parks and Recreation Specialized Program – both the Saturday Activities and Day Camp. He participates in neighborhood celebrations and concerts, attends church every week and many other activities.


I invite you to join me on an RHC tour, to meet him and learn why an RHC is the home of choice for him and others with such complex needs that they can only be managed in an RHC community.

Please, do contact me – I’d love to have a discussion, take people on tours of Fircrest or Frances Haddon Morgan Center, introduce you to my son and talk about how we can come together to truly advocate for ALL people with disabilities.

People may contact me personally at cherylfelak@msn.com

Tennessee Judge Rules for Families

Guardian/Conservator Authority
To Choose ICF/MR or "community" home

Excerpts from VOR Weekly E-Update:
"As families prepare for the closure of the Clover Bottom Developmental Center, on May 28, a court ruled in favor of the right (of) individuals and legal guardians to choose another ICF/MR (deemed a “congregate” setting), even when professionals have determined the individuals could be provided (for) in a more integrated setting. "

"The question before the federal district court in Tennessee was whether the Americans with Disabilities Act (ADA) precluded Clover Bottom residents, or their legal guardians, from choosing “congregate care.”

Citing Olmstead and Medicaid law, the Court ruled in favor of the state and families, recognizing the freedom to choose a large ICF/MR placement even if the individual could be appropriately served in a more integrated setting.

“The intersection of citizen choice and the ADA was addressed by the Supreme Court in Olmstead v. L.C.,” wrote the court. “[T]here is no federal requirement under the ADA that community-based treatment must be imposed on citizens who do not desire it.”

The Court was particularly persuaded by the brief of the Parent Guardian Association (PGA), which argued that “Conservators [and guardians] - who have the longest and most meaningful relationship with their loved ones and the greatest investment in their well-being - are in the best position” to weigh all benefits and risks of any placement option, and will give due consideration to the opinion of professionals."
Used by permisson of VOR.

To read the decision, go to: http://www.vor.net/get-help/legal-resources/. (Just click on this blog post's title)

What are your thoughts on the matter? Do you have experience with this dilemma? If so, would you be willing to share it? How does this work in your state? When, (if at all) is placement in the "most integrated setting" as or more important than other considerations such as proximity to needed resources, safety of environment &/or elements that make for least restrictive environment (also a part of the Olmstead ruling)?

Saskia

ICFs/MR & NFs AS PERMANENT HOMES

ENTRY AND PERMANENT STATUS RIGHTS

Did you know that ICFs/MR (Intermediate Care Facilities for people with Mental Retardation) & NFs (Nursing Facilities) can be elected by their residents as their permanent homes (or their legal representatives can make that choice for them)?

"Ugh! Who would want that?" People do; because, for some folks, such residences afford more, not less, freedom and independence. Also, specialized medical and therapies as well as supported activities available near home makes them very desirable to some. So, while this information isn't for everybody, it will be interesting for some who may have been having difficulty gaining entry and others who may be having trouble having their choice to remain honored.

It turns out that for those who qualify, entry and permanent status is a right that is supported by Medicaid Law. The matter came up because the State of Illinois had determined that ICFs/MRs were "transitional," not permanent residences. Led by Rita Burke, Coordinator and President of the Illinois League of Advocates for the Developmentally Disabled & VOR Co-coordinator, 30 organizations signed a letter to the Governor citing the laws relevant to ICFs/MRs as permanent homes. Here are some excerpts:

" Right to access ICFs/MR is an entitlement:
Participation by states in the Medicaid program is voluntary; however, if a state elects to provide certain services, the state’s provision of those services is “mandatory upon them.” 42 U.S.C. §1396a(a)(1).

If a state elects in its Medicaid plan (as Illinois does) to offer qualified individuals services in an ICF/MR, it must provide that “all individuals wishing to make application under the plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals.” 42 U.S.C. § 1396a(a)(8)."

" Right to ICF/MR services is legally enforceable:
The State must provide Medicaid services that it has agreed to provide to eligible individuals with “reasonable promptness.” The right to ICF/MR services has already been tested in Federal District and Appellate Courts in Florida. In Doe v. Chiles, 136 F.3d 709 (1998) the State of Florida argued that ICF/MR services are an optional Medicaid program. The Eleventh Circuit rejected the argument, noting that “even when a state elects to provide an optional service, that service becomes part of the state Medicaid plan and is subject to the requirements of federal law.” Id at721. (http://lw.bna.com/lw/19980317/965144.htm)"

" The Home and Community Based Waiver is OPTIONAL, NOT MANDATORY, and cannot be imposed on an individual who qualifies for and chooses an ICF/MR. In fact, the HCBS waiver will not be granted and may be revoked unless the state offers ICF/MR services to those who qualify.

The Medicaid Act provides that the Home and Community Based Service waiver “shall not be granted” to states unless the state provides satisfactory assurances that “such individuals who are determined to be likely to require the level of care provided in a hospital, nursing facility or intermediate care facility for the mentally retarded are informed of the feasible alternatives, if available under the waiver, at the choice of such individuals, to the provision of inpatient hospital, nursing facility services or services in an intermediate care facility for the mentally retarded.” 42 U.S.C. § 1396n(c)(2)(C).

CMS Regulations implementing this law stipulate that “CMS will not grant a waiver...and may terminate a waiver already granted” unless a state provides certain “satisfactory assurances” including assurances that “the recipient or his or her legal representative will be 1) Informed of any feasible alternatives available under the waiver, and 2) Given the choice of either institutional or home and community-based services.” 42 C.F.R. § 441.302(d)."

" Right to choose to remain indefinitely in ICF/MR services is protected by the Supreme Court decision in Olmstead v. L.C. “nothing in the ADA…condones termination of institutional settings for persons unable to handle or benefit from community settings…Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187, 17."

The letter to the Governor concluded that ICFs/MRs "are permanent homes and rights to them are enforceable under Federal Law when: 1. the individual remains eligible and 2. the individual chooses to remain."

The letter with complete introductory information can be found on the VOR website. The above excerpts were posted with VOR's permission. Copy/paste this URL: http://www.vor.net/get-help/toolkit-for-families/ or click the title at the top of the post .