Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

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Monday, May 30, 2011



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.