Dear National Council on Disability,
As a healthcare professional and advocate for our most vulnerable citizens, I ask that the National Council on Disability rethink your position regarding deinstitutionalization.
The council is advocating for negligent care by pushing forward with deinstitutionalization. Not only is this removing choice from these citizens (as guaranteed under the 1999 US Supreme Court Decision Olmstead) but also acting in violation of the US DD Act.
Supportive communities offer comprehensive care for our citizens with the highest support needs and most complex care. These communities (which unenlightened or inimical people call institutions – I assume because they are unfamiliar with these communities or people who have their homes in these communities) are homes to many of our loved ones. Living in a community, sharing services and supports, is a very cost effective method to care for those who have a high cost of care.
Moving these people to dispersed homes, isolating them from family, friends, caregivers and healthcare providers in the name of “deinstitutionalization” makes a mockery of advocacy. It is the exact opposite of what an advocate should do.
These dispersed homes often have unstable, inadequate staffing ratios and staff who are not trained well. There is little coordination of care leaving the vulnerable person at higher risk for crisis care. When care is finally given, generally these people have more advanced problems which require longer hospitalizations than if they had been managed with coordinated care which was accessible. Promoting this type of “care” is promoting negligence.
When a person is totally dependent on another person (and often a paid provider) to provide all care a
nd assist in all activities, what happens when there is no provider who shows up to work? When an unfamiliar, untrained provider “fills in”? When the provider does not speak your language? What happens if a person wants to go outside or on a walk but there is not enough staff to go on an outing and also stay home to care for a housemate? People become isolated and imprisoned.What happens is people do not see them anymore. When our vulnerable citizens are not seen they are forgotten, the risk of abuse greatly increases. When there is no one watching, no oversight, no one even knows they are there, people’s lives are destroyed. This is what happens.
Is the deinstitutionalization movement aimed destroying these people’s lives one by one, hoping no one will notice? If people who lived in a supportive community were dispersed, we wouldn’t have to see them or deal with them. Is that what this is about? It appears that way to me.
Supportive communities provide safe environments which are sustainable, employ a wide variety of profess
ionals who are specially trained and must meet annual standards of care. There is oversight which is monitored and there are clear standards which must be met. Why would one deny a person the right to safe, appropriate care?
Assuming dispersed homes are a better environment for many of these people is a false assumption
. Take a tour of not only supportive communities but also dispersed homes, learn about the caregiving staff, learn about access and availability of healthcare, dental care, therapies, recreational and work opportunities before making a decision about what you think would be best for someone you do not know. Listen to the people who know, love and care for these citizens. They are the experts . The experts are saying that we need supportive communities to best care for some of our citizens who are the most vulnerable. Denying them this choice is not only inhumane but against our laws.
I know what I’m talking about. My 18 year old son has thrived since being able to move to a supportive community at age 15. He had been cycling in and out of the hospital with many complications due to a dual diagnosis of developmental disability and mania/psychosis. Since moving to his community he has not been hospitalized once. He has the supports he needs to be stable and he loves his home.
My son was honored as a member of the Shorecrest High School Homecoming Court this past Fall. (S
horeline Public School ) Far from being isolated he is well known in his community being very active in ma
ny recreational programs. Living in a supportive community has enabled him to contribute, belong and participate in our community at large.
Thank you very much,
Cheryl Felak, RN, BSN
Because We Care – Beyond Inclusion
Attachment below is just a “sample” list of actual citations from Licensed Adult Family Homes for p
eople with Developmental Disabilities in Washington State. This list is FAR from complete and it is shameful the abuses and negligence which our citizens are subjected to. It is very disturbing to know that this is probably only the tip of the iceberg and that many of these are repeat, uncorrected offenses with little or no punishment.