‘The Waiting List: America’s Healthcare Crisis’
December 26th, 2008
Geraldo Rivera, host of the Fox network’s “Geraldo at Large,” will present a one-hour news special on December 27 at 10pm EST (repeating on December 28 at 1am) to discuss “the imminent need for action” for the hundreds of thousands of Americans with disabilities who have been waiting years for government services. Promotional video here.
In 1972, Rivera brought television cameras inside the Willowbrook State School on New York’s Staten Island and filmed widespread abuse and neglect occurring there. The institution housed more than 5,000 people with intellectual and developmental disabilities at that time. Rivera’s reports led to government investigations of the institution, which was eventually shut down.
Rivera said funding for community services and community-based homes, intended to take the place of institutions, has not kept pace with needs. Consequently, waiting lists of more than 285,000 people in at least 21 states have emerged as the new problem or the “new institution” for people with disabilities.
Among those scheduled to appear on Rivera’s special are Chris Burke, an actor with Down syndrome; Tim Shriver, chair of the Special Olympics; and Clay Aiken, an American Idol contestant who founded an organization that advocates inclusion for people with disabilities.
Earlier post here.
See also:
The least among us — Anchorage Press
Disability history collection a reminder of shared trauma — Minnesota Governor’s Council on Developmental Disabilities
(FOXNews photo)
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January 5th, 2009 at 1:43 pm
To Whom It May Concern:
Who we are:
We are the parents and legal guardians of an adult son who, from birth, has suffered the effects of severe mental retardation. Our son, age 40, has the mental capacity of a toddler. Because of the foregoing realities, we have been involved for over 35 years in our state’s service system for persons with mental retardation. Our family is the grateful recipient of licensed, public “ICF/MR” (Intermediate Care Facilities for Person with Mental Retardation) services, first, through regular respite care and emergency short term care, and, presently (for over twenty years), for full time residential treatment services for our son.
We are part of a state-wide parent/guardian association (Families and Friends of Care Facility Residents – “FF/CFR”) which advocates for a continuum of care service system for persons with mental retardation based on reality and common sense:
Our statewide organization supports:
(1) “home-based services,”
(2) “community- based services,” and
(3) “ICF/MR/” “Institutional” services for eligible individuals with mental retardation.
Why we are commenting on “Geraldo At Large – The Waiting List”:
The captioned program which aired last Saturday night (December 27, 2008) showcased in a very simplistic manner a complex societal issue. The program was a disservice to many disabled individuals whose needs cannot be met in small community living arrangements, and to the public.
Geraldo on occasion asked leading questions soliciting support from his guests for “Home and Community” programs to the exclusion of any congregate care (i.e., “institutional”) systems. The program was misrepresented as addressing states’ waiting lists for services, about which little was said; instead, the objective was to denigrate a much needed appropriate system of care (“institutional” programs) for persons who suffer from severe, profound, or very complex developmental disabilities.
Our nation’s public long term care policies should be based on need, common sense, first-hand experience, and reality. Long Term Care Policies for individuals with severe and profound mental retardation should be based on accurate information. Geraldo presented his preferred system of care by pushing the hot button on people’s feelings and an ideological agenda of “big is bad” and “the community imperative” (no one, no matter the degree of their disability or the realties of their family, should receive services in an institution).
Geraldo reported in graphic detail a terrible incident of abuse in a Denton, TX state-operated facility for persons with mental retardation and other developmental disabilities. He omitted any examples of the many comparable stories of individuals who are receiving care in home and community based waiver programs (see, for example the [November, 2008] story in KY, “UPDATE: Arrest In Group Home Homicide ” on WPSD Paducah, KY – Article. Link: http://www.wpsdlocal6.com/mostpopular/story.aspx?content_id=a4d2328f-69cd-4c24-b8d3-c66a14e08b97).
Currently there is a strong effort underway in the state of Texas by well organized opponents of congregate care, some of whom belong to publicly-funded groups, to close the state-operated facilities for persons with severe and profound mental retardation. Use of the media to sensationalize isolated incidents in the facilities is a recognized tool to undermine support for institutions. It is no accident that Geraldo’s selective, biased program chose the Texas incident at this particular time.
Geraldo’s final parting shot, that “it is cheaper” to serve individuals with disabilities in community programs was not an accurate or fair statement of this very complex issue. The relative costs of care in various settings depends on many factors. It should not be cheaper to serve individuals with complex medical needs when all costs are considered.
Guilt should not be laid at the door of aging caregivers when they are strained or unable to manage the care-giving. In many cases, there is no alternative to good institutional programs as the appropriate option. Our family provided total care for our son for the first 15 years of his life, with assistance from respite care provided by a state-operated institution and assistance from 12-month school programs and after school programs. Geraldo does not address the emotional toll on siblings without disabilities, or on marriages; nor does he address what occurs when families “age out” of care-giving abilities.
January 5th, 2009 at 10:56 am
As sent to Fox News:
I am writing to comment on Mr. Rivera’s program regarding the “Waiting List” for people with developmental disabilities. I had a sister (Beth) who was born with severe cerebral palsy, mild mental retardation and complex medical issues. Our family cared for her (like an infant) for sixteen years. We tried every feasible program and treatment for her. We were very fortunate that there was a State Residential Center (ICF/MR) located in our town –- Holly Center (www.hollycenter.org).
Beth lived at Holly Center for twenty years, until her death in 2004 from numerous medical complications. The last ten years of her life she was very medically fragile, fed via a stomach feeding tube, and very compromised with pneumonia and respiratory complications. Without the medical professionals and infirmary type care available at Holly Center, Beth would have been sent to a nursing home for inadequate/inhumane custodial care.
Holly Center was her home. She was safe and happy among her peers and surrounded by loving and caring staff. Beth was part of a larger community and had access to a swimming pool, class room activities, gardens, dances, festivals, church outings and a full time recreation staff. Holly Center is an integral part of our community and no one is isolated or segregated at this lovely facility. Thank God for Holly Center and what they did to make Beth’s life as good as it could possibly be, through all her struggles, pain and suffering.
When Mr. Rivera stated categorically it is cheaper in the community; that is not true. When caring for severely disabled individuals with complex medical or behavioral issues, a State Residential Center can offer very cost effective care that is all inclusive. When the cost of community based care is cited, it often omits all the add-ons, such as medical, dental, therapeutic, psychiatric, day programs, and recreational/quality-of-life programs.
Mr. Rivera chose to sensationalize the terrible assault of the resident of a Texas state facility. Yes, this was horrible, but the coverage was very biased in my opinion. The community based system of care is plagued with high staff turnover, lack of staff training, lack of oversight, lack of quality assurance, poor and inadequate medical care; there many opportunities for neglect and abuse. The level of mortality, neglect, abuse and financial malfeasance in the group home system can be horrific. Washington DC has closed all of its facilities for citizens with mental retardation with disastrous results:
Washington Post – Death and Abuse in Group Homes: http://www.washingtonpost.com/wp-dyn/content/article/2007/11/16/AR2007111601364.html
Mr. Rivera did a great service in exposing Willowbrook and helped to create a much higher standard of care at the State Residential Centers. I ask that Mr. Rivera not buy into the extremist view that all facilities are horrible and must be closed. The “community at all cost imperative” is so extreme it reeks of financial greed and harms those we love — those with complex needs. There needs to choices and options for citizens with mental retardation. One size does not fit all… Feel free to contact me with any questions.
Thank you,
Mark E. Engberg
mengberg@comcast.net
January 4th, 2009 at 7:54 pm
In responding to Geraldo Rivera’s “The Waiting List” aired on Fox News December 27-28,2008, Kym and Rebecca’s posts are right on target.
True: Geraldo’s efforts in exposing atrocities in Willowbrook helped lead the country to better services offering dignity and opportunities for individuals with developmental disabilities.
However, residential centers today are outstanding, well-integrated excellent homes for individuals who need and choose that setting for home and services. My family member lives at Holly Center in Maryland and, in very sharp contrast to the Geraldo show portrayal, enjoys an active life, is not in the least overly-medicated and has a balance of people, opportunities and services in his life which are very meaningful to him and contribute strongly to his well-being.
I’m hoping Geraldo’s journalism expertise coupled with compassion for individuals with developmental disabilities and interest in their wants and needs will lead also to his taking a good look at great homes in this day and age that are licensed and facility-based. Robin Sims from New Jersey issued an invitation for Geraldo to visit the state residential center home of her daughter. Many of us in Maryland echo that invitation as do families from around the country.
In addition to abominable institutional warehouses like Willowbrook 40 years ago, families, advocates and professionals know that in the 1960s and early 1970s there were next to NO services available in the community. Our family knew of families who kept their loved ones with developmental disabilities locked in the attic at home! It was a time of much ignorance educationally, medically and socially.
It would seem wise not to have had the show limited to comparisons made of 1970 Willowbrook and 2009 community services as being both currently accurate.
The show misinformed viewers in that:
1) The Waiting List issue was hardly addressed and it is a true crisis concerning us all.
2) The show’s points seemed to center on community children’s services and anti-institution generalities which did not reflect care and services in 2009.
**Regardless of the home setting, vulnerable individuals everywhere need to live free from abuse of any kind.
** Community services as well as facility-based homes need to continually improve.
** Failed community placements often lead to inappropriate nursing home placements.
** There are peer-reviewed studies showing that comparing equal services, cost of care is not higher in the ICF/MR level of care for individuals who have severe disabilities than it is in community homes.
In 2009 as each state in the country faces terrible waiting lists for services, let’s all work together to bring the best appropriate services, homes and jobs to the most individuals possible. Let’s keep a continuum of good quality services available so that more people’s needs may ultimately be met.
December 30th, 2008 at 9:13 pm
I am writing to respond to “The Waiting List”. As the parents and co-legal guardians of our adult son, we chose institutional care for him when we could no longer continue to provide the level of 24/7 care he required for basic survival. Our decision was based on our love for him and our desire to obtain the absolute highest level of quality care for him.
He has been receiving long term care and treatment services at Central Wisconsin Center for the Developmentally Disabled (CWC), located in Madison, Wisconsin, for the past 25 years. This is a Medicaid licensed facility owned and operated by the state.
Our son is far more medically fragile and complex than any individual featured on the program. While 29 years is his chronological age, his functional age is 2+ months. With no voluntary movement, unable to sit or talk, he is dependent on others for every aspect of his survival. The complications following his premature birth left him totally dependent on others for everything related to quality of life.
Lots of the residents at Central Center function in the 2-5 month range even though they are in their 20’s-70’s. The developmental encephalopathy manifests itself in such ways as uncontrolled seizures, severe spasticity, behavioral issues and profound cognitive impairment. As a former CWC medical director put it: “Many people living at CWC are so profoundly neurologically impaired that mental retardation really isn’t an appropriate descriptor.”
These are the individuals for whom institutional care can be the most humane and cost effective care available. CWC is truly one of the “intensive cares” of the system.
While the individuals’ family and friends remain an integral part of their lives, the general public has “forgotten” about this population and cannot or does not understand their medical complexities and need for this intensive level of care for survival. Unfortunately, Mr. Rivera’s denigration of institutional services was a disservice to those families desperately in need of this level of care for their family member with profound mental retardation co-existing with medical complexities.
My son is not “warehoused”, is not “isolated” as some would believe. He receives the highest level of medical care 24/7 by a multi-faceted interdisciplinary team. He will require this level of care for the rest of his God given days. He will require this level of care whether he resides in a facility with 200 other individuals lovingly tended to by a highly professionally trained staff or whether he resides in a home with 2 other individuals with a caregiver who has minimal training.
I do not believe that removing our son from this highly specialized medical facility would ever be in his best interest.
I would challenge anyone to come visit Central Wisconsin Center. Only by seeing can one begin to understand that developmental disability comes in many, many levels of ability and disability.
December 30th, 2008 at 11:49 am
Have you noticed how disability advocates are accused of being “thin skinned” when it comes to an unwillingness to be targets of societal sadism in the guise of comedy, yet the people who level such accusations are too thin-skinned to consider their own role in allowing for discrimination?
Wasn’t the same “lighten up” argument used years ago when African Americans began to request that they not be mocked with racial slurs? Isn’t it up to the minority to decide how they are defined, not those who don’t belong to that demographic (and, by the way, how are you so sure you’ll never belong to our demographic?)?
What exactly are disability advocates “taking away” from society when we ask not to be called “retards” or mocked for our disabilities?
December 30th, 2008 at 12:29 am
I am writing in response to ” The Waiting List ” report. I am extremely disheartened by a report that displays footage from decades ago and attempts to fool the viewer into accepting the illusion that this is how our current developmental centers are still run today.
I currently work in NJ for the Dept of Human Services at a center for people with development disabilities. I am blessed to be working with these clients and our center provides a priceless service to this population.
Many of our clients have been at our facility for numerous years, since their childhoods, this is their home. others have attempted life in a group home but due to self injurious behaviors, assault behaviors, sexually inappropriate behaviors, they do not thrive, can not co habitate in that type of living situation.
While I agree that some funding we are allocated can be redirected to seeing that more people with disabilities are placed in group homes, we must really be careful where we are making cuts, with a realization of the need for centers such as ours . There is no place for the client with dual diagnosis such as bi polarism and MR… placing them into a limited supervised setting such as a group home sets them up for failure, places them at risk for greater neglect and abuse then they would ever be at in a structure environment such as our center.
This broadcast also failed to fully tell a story of a group home, the limited staffing available, the employees whom sometimes are worked far longer hours, if their relief does not show up. It also fails to tell of such tragedy that can occur when minimally educated staff face problems with clients health issues ( please educate the public on Danielle’s law and how that came to light.)
For a certain percentage of people with developmental disabilities, who function at a high degree, with no heath issues, with none to minimal behaviors, a group home maybe a valid option, but let us not be so hasty that we forget about the population that are profoundly disabled, have no family, were abandoned to the care of centers such as ours. The percentage the public does not want residing next door to them, the people who are still frowned upon in social situations, whose behaviors are not socially acceptable at all times.
Without telling both sides of this story Geraldo may be dooming them to abandonment by our government and what will happen to them then?
After the willow brook story , there was a huge reform in the care of these clients. Facilities attempt to be restraint free (restraints are utilized when a client is injuring themselves or perhaps a peer and only for a minimal amount of time).
Our clients partake in socialization, on grounds as well as off grounds, Attend religious service, self advocacy groups, school, some have jobs off and on grounds. They exercise, participate in special Olympics ( they train endlessly to be able to do that with our staff ). They have purpose and goals and the staff facilitates the process and provides structure and safety for these clients.
What a shame we are looking at the past instead of today and giving praise to centers such as mine and the co workers I am proud to work with who love and care for these people everyday .
I find it ironic that Geraldo aired a person who was minimally disabled (Down syndrome ) and certainly is capable of higher function and productivity and needing much less supervision and care, yet failed to show a much greater impaired individual whom was perhaps so profoundly disabled he/she beats their own face until they are blind, or someone who has explosive disorder and assaults their parents. Maybe a client who pulls off all their finger and toe nails ..
I wonder if Geraldo feels they are going to thrive in a group home, maybe one next door to him. I am sure he would have the patience and tolerance for a person so obsessed about his/her bowel movements they request anyone and everyone to check their behinds for them, or smear fecal matter all over themselves.
I invite anyone who feels no need for our developmental center to contact our foster grandparents association, our parents association , our CEO … visit us.
Come view our videos of dances, field trips, proms. See the contentment and love our clients have for their home and those people who care for them.
If funding is cut at our center, I will venture to guess it will be in the direct care departments… sadly not the real ” fat” in the system ….I am in agreement there certainly is some ” fat ” that can be trimmed though.
In an ideal world there would be some compromise. some happy medium, until then I can only pray each and every person who is inflicted with a developmental disability finds the services they require and our government can and will be there to help them.
December 29th, 2008 at 5:23 pm
There is a bit of “thin skin” to what many people view as comedy.
I did not see the Saturday Night Live skit as mean-spirited. Instead it was more of a parody of all-things associated with Governor Paterson; his blindness is a part of who he is and impacts how he functions in some respects. The laughs were more in tune with Paterson’s personality and tendency to make jokes that are not really that funny.
We have all laughed at Stevie Wonder over the years as he made jokes that fell flat, but he laugh anyway and so did we. There are natural mistakes that are made by people whether they have disabilities or not. Some of the funniest conversations I’ve had involved people with disabilities and temporarily abled-bodied/nondisabled people sharing about their most embarrassing moments and struggles. Some involved their disabilities and some were more humorous because of their disabilities.
The fact is that everyone laughed. There are some things that are not funny and some things you need to laugh about or you will spend all you time crying about what is a part of all of our lives.
December 27th, 2008 at 10:38 am
“Clay Aiken, an American Idol contestant”
Clay Aiken is so far beyond a contestant that it is just wrong to label him as that when he has accomplished so much in the past 6 years.
Clay is a UNICEF Ambassador since 2004 who has been sent to Indonesia, Uganda, Afghanistan, Mexico, Kenya and Somalia on missions to bring aid to children in crisis.
His Bubel Aiken Foundation funds summer camps and school programs from K-12 to foster inclusion of children with disabilities into the same environment as their typical peers.
He is a NY Times Bestselling author and a multi-platinum recording and touring artist.
He is an actor, just finishing a year on Broadway starring in Spamalot.
Those American Idol days are long forgotten. You wouldn’t label someone like Frank Sinatra or Gladys Knight as a talent show contestant any more than you would Justin Timberlake or Britney Spears. Its ancient history and only a single step in an evolving career.