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

ActionDD team for NAMIWalk

NAMIWalk - Seattle, WA

ActionDD formed a team to walk in the fundraiser for NAMI to help bring awareness to the issues that many of our family members face - being dually diagnosed with both a developmental disability and mental illness.

NADD, an association for persons with developmental disabilities and mental health needs, is an organization that I recently joined to gather more information. As you can see, this population is not a small segment of the whole DD population and really needs to be advocated for.

Mental Health Aspects of Intellectual and Developmental Disabilities:

"Persons with a dual diagnosis can be found at all ages and levels of intellectual and adaptive functioning. Estimates of the frequency of dual diagnosis vary widely, however, many professionals have adopted the estimate that 30-35% of all persons with intellectual or developmental disabilities have a psychiatric disorder. The full range of psychopathology that exists in the general population also can co-exist in persons who have intellectual or developmental disabilities.

The co-existence of intellectual or developmental disabilities and a psychiatric disorder can have serious effects on the person's daily functioning by interfering with educational and vocational activities, by jeopardizing residential placements, and by disrupting family and peer relationships. In short, the presence of behavioral and emotional problems can greatly reduce the quality of life of persons with intellectual or developmental disabilities. It is thus imperative that accurate diagnosis and appropriate treatment be obtained in a timely manner."

http://www.thenadd.org/pages/about/ddinfo.shtml

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A phenomenon which we seldom see discussed is dual and multiple diagnosis among people with developmental disabilities. Mental illness is among the more common problems with which it can be paired. Another very challenging situation occurs in families in which one child has a developmental disability and another has a mental illness.

The following invitation comes from a parent who has such experience and is out there, working to help both problems!

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MARK YOUR CALENDAR!
May 15, 2010
NAMIWalks for the Mind of America

Seattle, WA at Magnuson Park at Sand Point
(enter at 74th St. on Sand Point Way)

Written by Cheryl Felak: 4/4/10 @ 7:43pm

I am writing you today to tell you about an upcoming event that I am participating in that is both very important and very exciting to me. It is NAMIWalks for the Mind of America, NAMI’s signature walkathon event:

I have formed a team in honor of 2 organizations:
ActionDD, a grass-roots advocacy group for people with developmental disabilities. The people in ActionDD have been tireless in promoting dignity for all and a continuum of care. This includes maintaining Washington's Residential Habilitation Centers. I invite you to come and walk with me in this organization's honor.

NAMI, the National Alliance on Mental Illness, is the largest education, support and advocacy organization that serves the needs of all those whose lives are touched by these illnesses. This includes persons with mental illness, their families, friends, employers, the law enforcement community and policy makers. The NAMI organization is composed of approximately 1100 local affiliates, 50 state offices and a national office.

I am also walking in honor of family members, friends and caretakers of those with mental illness. The goals of the NAMIWalks program are: to fight the stigma that surrounds mental illness, to build awareness of the fact that the mental health system in this country needs to be improved, and to raise funds for NAMI so that they can continue their mission.

I would like to ask you to come and walk with me or donate to support NAMI in this great event.

Visit my personal walker page to sign up: http://www.nami.org/namiwalks10/SEA/cheryl (Click on link in side list or copy and paste). It features a link to my team's page where you can see who else is walking with me. There is also a link so you can donate directly to me online. Donating online is fast and secure, and I'll get immediate notification via e-mail of your donation.

NAMI is a 501(c)3 charity and any donation you make to support my participation in this event is tax deductible. NAMI has been rated by Worth magazine as among the top 100 charities "most likely to save the world" and has been given an "A" rating by The American Institute of Philanthropy for efficient and effective use of charitable dollars.

Thank you in advance for your support.

Sincerely,
Cheryl Felak