Parent CommentsbyCheryl Felak(Tomorrow, end of business, is the deadline for written public comment on the proposed King County DDD 3 year plan. Have you written & sent your input? If not, your voice is important!
For access to the draft plan and submission info, click on this post's title.)
Cheryl is a parent whose son with dd lived at home until it recently became too difficult for everyone concerned. She reports that he is now thriving in an RHC (residential habilitation center).
Here are her comments:•
Improve after-school programs for disabled children - maybe right at the school. Needing to be home every afternoon at 2:30 to get my child off the bus made it impossible for me to work. Since our son is not independent in toileting, many of the afterschool programs, ie: Boys and Girls Clubs, would not take him. Respite providers generally were not available after school – many of them work in the schools and can not get to a respite job in time to get a child off the bus.
•
Why are our public monies going to agencies that do not support the needs and choices of ALL disabled? For instance, the Arc of King County is adamant in the rapid closure of the Residential Habilitation Centers. These centers are indeed communities and they are the best option for many of our disabled family members. I would like to see our money spent on promoting a continuum of care and realizing that each individual has specific needs that cannot always be accommodated by a system that does not have the continuum of services in place.
• KCDD Mission – what is the definition of “community life” here? Community is a buzz word that has taken on the meaning of “non-institution”. People need to realize that living in an institution is also a community and one can lead a full life in that setting also.
• Natural Supports – these are much easier to utilize when the child is young. Once the child is a teenager and needs total assist for personal care the supports tend to fall away. This may be more of a problem with those DD children who also have a mental illness. Friends and family members become afraid of the person and are unable to help. This is also probably more of an issue with the need for pervasive support intensity.
• Waiver – make it easier for the client to access the funds – huge waste of time, effort and money trying to find a contracted provider. If money was available to the client, could get needed durable medical equipment, personal care items for a better price and not have to pay a huge mark-up to a third party in order to acquire the needed items. A doctor’s prescription, OT recommendation, etc, should be adequate documentation that equipment is needed – why so much hassle to prove that item is needed for client?
•
SOLA – states “providing instruction and support to clients” what about health and safety of the client?
• Huge issues of DD clients who also have mental illness – where do they get services? This is not an issue for behavior management – these need to be handled by coordinated team of a psychiatrist and another healthcare professional who is familiar with the issues of the DD client. Most psychiatrists are only trained in dealing with typically developed children who are mentally ill, not DD children who need total assist for activities of daily living.
• Outreach, information and Assistance Services – Why is the Arc of King Count y the only agency that KDCCC contracts with? Again, the Arc discriminates against those who need the RHC services to remain safe and healthy – this is a biased position and in order to be an advocate, it is important to look at all alternatives that may benefit the client.
• Advocacy and Leadership Training – Again, KCDDD contracts only with the Arc of King County. “King County Parent Coalition for DD for parents and family members to advocate for a better future in the community for all individuals with DD, learn advocacy skills and network with other family members in King County.” This is a false statement. The Arc of King County does not advocate for ALL disabled. As stated previously, that organization only advocates for those that benefit from living in small, residential homes and excludes those who need the services of the RHCs.
• Seattle Parks and Recreation has been a tremendous benefit to us. Our son has gone to the Saturday activities programs and day camps for years. He absolutely loves them. He has been able to go places and do things that he would never have been able to do if it was up to us, his family, to provide that. PLEASE fund more of this program – they are the best!!!
I have a
few more comments in regards to the draft of Developmental Disabilites Services. This may get a little graphic, but I would really like people to understand about the issues and how important Active Treatment is in the care of our family members.
Our son is 16 years old. He has DD/Bipolar Disorder and possibly some schizoaffective disorder. He needs total assist for all personal care. His fine motor skills are extremely poor - he can't write his name, pull up his pants, put on his shoes, etc not only due to motor skills but also due to lack of attention and visual deficits. He does not feel pain sensations.
It takes time and effort and much encouragement to get him to try to put his shoes on. Once they are on, if we don't leave and go where we are going, they will be taken off again and you have to start all over. He needs someone to constantly be aware of where he is and what he is doing to maintain his health and safety.
It took us 2 years of daily trials to get him to sit on the toilet for 1 minute. At this point we are still trying to get him to inform someone of when he needs to have a BM and have a diaper put on. So far, the only time that he succeeds with this skill is for me - at other times he is incontinent. He is very reluctant to inform caregivers of his personal needs if he is even aware of them. It takes a very intuitive caregiver to communicate with Thomas in order to understand what he needs. One needs to watch his movements carefully - this is what indicates if he might be in pain. This care takes time and focus. Without this, it becomes too easy to just do everything for him.
I'm concerned about issues with children like ours who live in a group home or SOLAs. The staffing is not adequate to provide for active treatment. Active treatment is critical in order for progression to be made. Without this part of the care provided, children with needs similar to our son's, would lose skills that they have worked so hard to attain. This would also decrease their potential to be active participants in jobs and or social activites.
Provided for posting by Cheryl Felak as provided to the King County DDD as comments on the draft 3 year proposal.
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The notice below was first posted April 20. Tomorrow, April 30, by "close of business" is the deadline for comments. Here it is, again, for submission details as well as time and place of public meeting.
Tuesday, April 20, 2010
PUBLIC INPUT NEEDED: 3 YEAR PLAN
KING COUNTY PLAN
2010-2013 Services
For People with Developmental Disabilities
Including
Children : Birth To 3 years
Letter :
From: Campbell, Jane [mailto:Jane.Campbell@kingcounty.gov]
Sent: Monday, April 19, 2010 3:29 PM
Subject: Public Input to King County DDD 2010-2013 Plan
The King County Developmental Disabilities Division (KC DDD) has released the draft Plan for Developmental Disabilities Services for public review and comment at http://www.kingcounty.gov/healthservices/DDD/plansAndPolicies/2010-2013DDPlan.aspx .
The plan covers the period of July 1, 2010 through June 30, 2013.
The plan covers
early intervention services provided for children ages birth to three who have a developmental delay or a developmental disability,
and also
those services and supports provided to individuals with a developmental disability
who are enrolled in the Washington State Department of Social and Health Services Division of Developmental Disabilities who are living in the King County community.
King County invites and welcomes public comment on the proposed draft plan.
~ Written public comment will be received through close of business, Friday, April 30, 2010. A link is available on the DDD website so you can email your thoughts. (click on title of this article to open web page: find download of plan button + input button on right side of web page)
~ A public meeting to discuss the plan will be held by the King County Board for Developmental Disabilities
Wednesday, May 5, 2010 from 9:30 to 11:30 a.m.
Washington State DSHS Division of Developmental Disabilities
Region 4 Office,
1700 East Cherry Street,
2nd Floor Meeting Room,
Seattle.
The meeting location is wheelchair accessible.
Jane E. Campbell
Assistant Division Director
King County Developmental Disabilities Division
401 Fifth Avenue, Suite 520
Seattle, Washington 98104
206-263-9017
