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, July 4, 2011



It has taken me a while to digest some staggering information from 2 budget "conferences" led by DSHS last Thursday. The primary speakers were Susan Dreyfus, DSHS Secretary and Mr. Doug Porter, Assistant Secretary for DSHS Health and Recovery Service.

Mr. Porter explained that many of the cuts are in jeopardy due to legislated "start dates" that were too "optimistic" with "impractical timelines": so some legislation will need to be revisited, next year.

New DDD (Division of Developmental Disabilities) " Investments"
The DDD will invest $10,000,000 in "community services." to provide Quality Assurance for Adult Family Homes, , it will invest an additional $1,500,000 for Vulnerable adults. Friends who are case workers tell me that the first residential placement they are supposed to try for a person with ID/DD is an Adult Family Home. Hopefully, the $1.5 million Quality Assurance Program that is developed will prevent the kinds of tragedies that were cited in the Times series that detailed horrendous abuse and neglect after DSHS had moved people from nursing homes to Adult Family Homes. http://seattletimes.nwsource.com/html/seniorsforsale/ , http://www.youtube.com/watch?v=w2fGpw6oQ64 Seniors For Sale: Dotti and DSHS.

"Community" Services: DDD & Other Reductions .
Personal Care Hours are reduced.
Mandatory caregiver training is deferred.
The employment and Day Services programs are modified, requiring, in some cases a change of waiver status.
Disability Lifeline Program funding is drastically cut.
State Food Assistance is cut.
Reduction in Mental Health Funding (RSN)
Reduction in Chemical Dependency Services
Staff funding & operating costs reduced at State Hospitals.
Management & Administrative funding is reduced: (Ms Dreyfus states this includes Oversight and Quality Assurance)
Medical cuts are drastic, including the closure of some Rural Health Centers, cuts in outpatient visits, non emergency emergency department cuts, & "Healthy Options FQHCs, antidepressants, wheelchair limitations, OT, PT, ST limited variably depending on origin of need. No glasses, hearing aids. Adult dental is available to Home and Community Based Waiver clients only. To learn more: dshs.wa.gov . Click on : "DSHS legislative highlights"

The Department is increasing the TAKE CHARGE PROGRAM, but taking eligibility down from 350% to 250% of the federal poverty level. (I am not familiar with this program, but am reporting what I heard in case readers who need the service understand it.)

Medicaid purchasing is moving to the Healthcare Authority. Little explanation was given for this "efficiency." It was stated that "not all things funded by medicaid are moving to the Authority." Confused yet? Me too.

Ms. Dreyfus praised the Department's tracking system which she says can track across departments and programs! She stated that DDD is required to make 4 assessments in the year following a move by "Money Follows The Person" clients. She seemed utterly unaware that the Department is drastically behind in their assessments and had stated as much in their Decision Package that was provided to the legislature. My sincere question is: if there is in place such a wonderful tracking system which can track across programs and departments, why is it like pulling hens teeth to get ALL of the "community" costs for any given client or any group of like clients?

Ms Dreyfus sounded proud and happy to have closed Frances Haddon Morgan Center, and frozen admissions at Yakima Valley School, saying that we still need "rehabilitation" centers (the centers are "habilitation" centers because the skills being taught are for the most part new to the clients; it is not a recovery process, but, evidently, Ms Dreyfus does not know this or may simply have trouble with language.) She went on to say we simply need fewer "rehabilitation centers" and they should only be for the hardest people to serve.

Challenges To Be Met

It continues to concern and perplex me that Ms Dreyfus, the governor and the legislature all ignored the very clear language in ADA/Olmstead that gives clients who qualify for ICF/MR level service CHOICE between "community" and "institutional" residence. According to this law, which HAS been tested and DID PREVAIL in Florida, the client must be admitted within a reasonable amount of time and may elect to make the institution their home. It does not matter what age they are or if they are "the hardest people to serve" or not, or , according to a letter written by CMS to DSHS, whether the legislature has appropriated enough money or will have to appropriate more via supplemental budget. Ms. Dreyfus, of course, did not approach this subject.

I would like to hear your thoughts concerning the possibility of using RHCs instead of home and community based waivers when budgets are cut below levels supportive of meeting the needs of the client and his family. If this would not be a good idea, I am eager to hear why, not ideology, but real concerns and fears. If you think it would be a good idea, I would like to hear why it would. Again, not generalizations, but thoughtful information that might be helpful to folks who soon may be faced with such difficult choices.

Real World Fallout From the Budget Cuts
Toward the end of the second conference, one such person, a mother, challenged Ms. Dreyfus, asking if the state would accept responsibility if, after having cut her hours of service, she had to get another job and her son got hit by a car while wandering in the street looking for her or if he burned the house down while she was at work. She explained she was worried about this because she does not have the money to pay a caregiver so she can leave him attended while she is at work. After she had repeated her fear about 3 times, Ms Dreyfus directed her to speak with a particular person to see what could be worked out for her.

A caregiver explained that the needs of her severely affected patient had increased and she had tried numerous times to procure something that was required due to his worsened condition, but finally, her job had been threatened because she was so persistent. She, too, was directed to talk with a specific person.

After these two complainants, another provider spoke on behalf of families and providers who "don't know how to work the system", saying that children's services in DDD were "hardly accessible."

RHC Parents and Guardians: Be Thankful
Yes, there have been cuts to RHC amenities and the loss of the RHC infirmaries was a loss to "community" residents as well as RHC residents; but Federal requirements are strict and protect RHC residents with regard to health, safety, jobs, recreational activities, behavior management and learning as foundation for independence when appropriate to the resident's capacity. Most of us can go to sleep at night trusting our loved ones are safe and appropriately cared for in our absence. And we also know that we are welcomed and respected as authoritative members of their professional teams with as much participation as we desire and can do.

One of my long standing fears about community placement for my sister has been that when a problem might arise, as they inevitably do, logic, creativity and the fact of her need would not be sufficient to overcome the roadblock of insufficient funding. When problems arise, it is, of course, a bother, but the good news is that there is always some place to go, some way to resolve differences to the benefit of our RHC resident.

I am looking and listening for ways to encourage DSHS to bring the "community" Quality Assurance performance up to the standards to which RHCs are held without diminishing the RHCs.

From my own review of numbers and letters to CMS, I know that Cheryl Felak's comments regarding "no paid services" in the DDD system ( http:/ddexchange.blogspot.com/2011/07/progress-or-pie-in-sky.htmlcomments ) are correct, but, even for those people who currently don't need DDD services there will come a day when most of them will.. Whatever their choice, then, if they qualify for institutional and HBCS services, we want them to be secure, and safe with all of their needs met. Getting from" here", where, generally speaking, that is only true of people using RHC services, to "there." where "community " dd services in truth will be offer the same high quality of care with adequate supervision, requirements for programs, healthcare, therapies, & audits with adequate funding is our collective challenge. Only when it has been met will the focus be right: that is, "Considering all of his or her needs, which on the spectrum of choices is the most supportive environment for the client and his/her family?"

Let's have your ideas and the ideas of your friends. Network these considerations,
please, and invite them to the blog. Collectively, we are exponentially more creative than the sum of us together. (Synergy)

Thank You,