Excerpts from letter to HUD from the National Association of the Deaf, 4/25/13

[Read the full letter here.]

Secretary Shaun Donovan

U.S. Department of Housing and Urban Development

451 7th Street, SW

Washington, DC 20410

Dear Secretary Donovan:

The National Association of the Deaf (NAD) is contacting you in your capacity as the head of the United States Department of Housing and Urban Development to raise our heightened concerns about the egregious state of housing for deaf and hard of hearing individuals in the United States....

In a nutshell, your agency, HUD, is forcing deaf and hard of hearing individuals to only live according to an ideological vision of forced integration. The tragic irony is that such an ideology has punished deaf and hard of hearing individuals seeking a higher quality of life and a safer place to live and has actually resulted in the forced isolation of individuals who are deaf and hard of hearing...

In essence, most deaf and hard of hearing people who reside in public or subsidized housing live in fire-traps because the smoke alarms do not alert them visually or in other non-audible ways. Even if they do have a stand-alone smoke alarm that visually alert them, this alarm is typically not connected to the other smoke alarms in a housing complex. As a result, a deaf resident would only know of a fire in a complex if the fire was so close to their own unit, at which point, it is probably too late for the deaf resident to leave the complex.

Moreover, due to the unique communication needs of deaf and hard of hearing people, many of them exist in isolation in inaccessible housing where there is no one else to communicate with in sign language. These residents therefore experience extreme loneliness and depression, and their quality of life is deplorable.

Yet, HUD has the atrocious gall to intervene in a housing project that was designed to be a place of complete accessibility for everyone including deaf and hard of hearing people. Instead of encouraging a paragon of accessibility, HUD is forcing deaf and hard of hearing residents to live in isolation and in fire-traps where they are not only without practical fire alarms that alert them, but without access to even the most basic communications access to the community in which they live...

Specifically, we are extremely concerned that HUD is currently pressuring the State of Arizona to sign a “voluntary” compliance agreement that would prohibit an award winning housing project called Apache ASL Trails from giving preference to its state-of-the-art accessible housing units first to individuals who need those accessibility features and services provided at Apache ASL Trails once the total number of residents with disabilities exceeds HUD’s arbitrary quota of 25%.  There is no statute or regulation that mandates any such 25% quota, and the imposition of any such quota is an ideological principle that ignores the reality of housing needs for many people with disabilities including deaf and hard of hearing individuals. [emphasis added] There is, however, law that requires that these individuals be given a full and equal opportunity to live in accessible housing that meets their needs.

While many of the residents at Apache ASL Trails are deaf and chose to live there because they sought out the desperately needed accessibility features of this unique complex, not all the residents are deaf.  Apache ASL Trails opened in 2011 and there has never been a discrimination complaint filed against them nor have any qualified applicants been rejected by Apache ASL Trails.  You do not need to be deaf to live at Apache ASL Trails...

The NAD believes that true housing equality means that individuals with a disability must be granted the freedom to choose to live in and benefit from housing that is equal to the housing available to others.  We urge you to immediately halt advancing arbitrary maximum quotas and to cease denying preferences to individuals who need the accessibility features of a unit and wish to live in that unit.  Please feel free to contact us if you have any questions or need additional information.  We look forward to your response.

Sincerely,

Christopher D. Wagner     

President                        
Howard A. Rosenblum  

Chief Executive Officer

Co-signed by 75 organizations for people who are deaf or hard of hearing

HUD raises discrimination concerns over housing project for the deaf

A housing complex for deaf seniors in Tempe, Arizona, has run into problems with the federal Department of Housing and Urban Development (HUD). Arizona has allocated money from HUD to help pay for the project, but HUD has raised questions about the housing complex on the basis that it discriminates against people who are not deaf.

According to an article in the New York Times entitled "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination" by Fernanda Santos, 4/28/13, the project called  Apache ASL [American Sign Language] Trails is specifically designed to meet the needs of people who are deaf and use American Sign Language as their mode of communication: "Designed by a deaf architect to fit the needs of the deaf, its units have video phones and lights that flash when the phone or the doorbell rings. Wiring in common areas pipes announcements made through loudspeakers into residents’ hearing aids." The design fosters a sense of community among its residents and has the full support of the Arizona Department of Housing that hoped it would be a model for similar projects.

Other advocates say that HUD's finding of discrimination might "complicate" other projects in which federal money would be used to build housing for adults with special needs: "Already, the Southwest Autism Research and Resource Center, based in Phoenix, has scrapped plans to use federal grants to help pay for a development designed for autistic adults, opting instead to pursue private financing."

HUD's adherence to convoluted and ideologically motivated reasoning has angered advocacy groups for people who are deaf and hard of hearing across the country. In a letter signed by 75 organizations, the National Association for the Deaf (NAD) writes, "In a nutshell, your agency, HUD, is forcing deaf and hard of hearing individuals to only live according to an ideological vision of forced integration. The tragic irony is that such an ideology has punished deaf and hard of hearing individuals seeking a higher quality of life and a safer place to live and has actually resulted in the forced isolation of individuals who are deaf and hard of hearing."

Ironically, Jeff Rosen, who is deaf and the chairman of the National Council on Disability, which advises the federal government on disability policy, "…said these types of discussions could help the government better understand the challenges faced by groups of disabled people like the deaf, who do not often have the opportunity to live in a community that they feel is 'appropriate and fit for them.'"  Although the NCD has not taken a position on this particular issue, it recently published a report in support of deinstitutionalization of all people with developmental disabilities. 

The NCD, in a monumental display of overreach by the agency and advocacy groups supporting it,  declared that the term "institution" should be redefined as any congregate setting of 4 or more people "who do not choose to live together", ignoring the reality that many people with DD are not able to make such choices and rely instead on family members and guardians to decide for them. Furthermore, limiting settings based on the number of people is not mandated by the Americans with Disabilities Act or the 1999 Supreme Court Olmstead decision on discrimination. Strong objections to the NCD report have so far not moved the the agency to retract or modify its position on accessibility to a full spectrum of specialized settings by people who have developmental disabilities. 

According to the New York Times article, Mr. Rosen says, “Our understanding of discrimination and disability policies is evolving.” Let's hope so. 

NCD Report on Deinstitutionalizatioin : Part 4

The National Council on Disability met today for its quarterly meeting in Washington, D.C. Anyone calling in to the NCD can give comments to the Council. Check on their schedule of meetings and agenda. Some public comment periods are open only for specified topics and others are unrestricted. 

These comments are about the NCD's Report on Deinstitutionalization and the NCD's failure to acknowledge or explain opposing views.

***********************************************************
Comments to the National Council on Disability
April 23, 2013

Jill Barker
Ann Arbor, Michigan
The DD News Blog

You have heard from individuals who opposed the NCD report on "Deinstitutionalization: Unfinished Business". I think that the NCD needs to do more to include opposing views on this and other subjects from people with severe developmental disabilities and their families:

• I have two adult sons with profound intellectual and developmental disabilities. My sons and people like them appear to be invisible to the NCD. When the NCD redefines an institution as any setting with 4 or more individuals who did not choose to live together, it does not acknowledge that there are people who cannot make such choices. My husband and I, as our sons' co-guardians, make these choices for them because both our boys are unable to exercise their rights on their own behalf. We make these choices based on what we know to be their preferences and needs and not without considerable thought to how their lives will be affected.
• The NCD report on deinstitutionalization makes no attempt to assess how the recommended policies will affect people with severe disabilities. How many 10's of thousands of people will be displaced from their homes? How disruptive will policies be to the lives of people with severe disabilities and their families when they lead to the elimination of services and settings that are not "fully integrated" (as defined by the NCD)? In writing the report, no one bothered to ask. In interviews with individuals with disabilities, only those who reinforced the views of the NCD were included in the report. No attempt was made to include opposing viewpoints or explain the reasons for them. 
• Who stands to benefit from policies that push the ideology of full inclusion to its illogical extreme? Such policies provide cover for states that seek to cut costs while being heralded as promoting freedom for individuals with disabilities. How many people will be "liberated" from services and residential options they need to survive? By promoting residences of fewer than 6 people, in Michigan at least, this will relieve the State of having to license and regulate living situations. In closing larger facilities, there is no guarantee that services will be financially sustainable for people with the most severe disabilities or that savings will go to expand community services.

By focusing in this report so narrowly on eliminating options for people with severe disabilities, the NCD has missed an opportunity to call attention to the problems in community care and solutions that include a broader spectrum of ideas and opinions.

Massachusetts : Guardianship of DD son challenged because of disagreement over placement and "excessive clutter" in the home

Long and Winding Road

My daughter and I occasionally watch "Hoarders: Buried Alive" to reassure ourselves that our housekeeping is "not that bad." It seems, however, that being "not that bad" may be bad enough for the state of Massachusetts to use "excessive clutter" as one of the excuses for removing guardianship from a 65-year-old mother whose adult son is developmentally disabled. Not only has the mother disagreed with the state's placement recommendations for her son, but her house contains stacks of newspapers and magazines.

According to a blog post from 4/10/13 by Dave Kassel at COFAR Blog, Patricia Feeley has had a dispute with the Massachusetts Department of Developmental Services over her request that her son be placed in a residential center with 24-hour/day nursing care.  Michael Feeley has severe diabetes and needs up to seven insulin injections a day. He is also non-verbal and is unable to dress or bathe himself. The mother and guardian of Michael says she was told that her son's IQ is too low to measure.  According to the blog post, her son's medical needs are backed up by a letter from a physician at Children's Hospital in Boston who wrote that Michael’s blood glucose spikes at times “for no apparent reason,” and that “it is not possible to predict when that might occur…A nurse needs to be present and able to attend to Michael’s needs at any time to avoid a delay in Mike receiving appropriate medical intervention.”

The Massachussetts DDS wants Michael moved out of his mother's home and into a group home that does not provide 24-hour/day coverage by nursing staff. They have asked the Probate court to remove Michael's mother as his guardian and replace her with an attorney who is described as an "advocate" for Michael, but DDS has acknowledged in a court document that the attorney has never previously met Michael.

The DDS is concerned about Michael's safety, but not because of his severe diabetes and other disabilities. It's those pesky newspapers and magazines that his mother has allowed to pile up in her house. Perhaps Michael's mother would have more time for housekeeping if she did not have to administer the insulin injections herself, monitor Michael’s blood glucose, and personally provide all other care at home for him.  Michael’s extensive care needs prevent her from working full time. And she receives no services from the Department of Developmental Services to help her.

Patricia Feeley's attorney is baffled by the state's challenge to his client's guardianship of her son. He has noted irregularities with the court filings by the state, including "the lack of a signature of a human being on the petition document.  On the signature line of the petition, which states that the document is signed under the penalties of perjury, someone had written only 'Department of Developmental Services.'" He says that DDS  “can’t execute a document under the penalties of perjury, because such penalties can only attach to a human being…”

Here is the full story. Read it and weep.

Proposal for Medicaid Dental Clinic in Washtenaw County, MI

The Reader

The day before I take my son Danny for his annual cleaning to a private dentist who does not accept Medicaid dental insurance, I read in my local paper that there are plans afoot to establish a clinic specifically for people insured by Medicaid. Danny is one of those people who is on Medicaid, but in recent years, of the dentists who will accept his insurance, we have not felt that his dental care was adequate to his needs. I am all for the new clinic as a way to serve more people who need and deserve better care.

An article in ANNARBOR.com, "Washtenaw County considers dental clinic for Medicaid patients" by Amy Biolchini on 4/10/13, provides details on the need for a clinic and looks at a proposal for funding and operation of a clinic specializing in Medicaid patients.

The Washtenaw County Director of Public Health Dick Fleece, three of the County's 9 Commissioners, the County Executive Verna McDaniel, and the staff from the Universtiy of Michigan's Dental Clinic met to discuss a proposal to build a new dental clinic in the County.

Because of the low reimbursement rate for Medicaid dental care, less than 1% of the 300 dentists in Washtenaw County accept Medicaid patients. [How's that for an effective way for the state to get credit for providing dental insurance for low income people while not following through by funding it adequately?] While there are other free dental clinics in Ann Arbor, they are limited to people who do not have insurance, or they are limited in the number of people they can treat or are not able to treat people with medical or behavioral problems. Fleece, the Director of Public Health is asking for funding from the County to build the clinic that would be paid back over the next 10 - 20 years.  If the clinic is associated with a local health department, it is eligible for a higher reimbursement rate for Medicaid dental services.

He proposes that the clinic be run by "Michigan Community Dental Clinics Inc., a nonprofit company that runs dental clinics for 22 health departments in the state". The County Executive Verna McDaniel is supportive of the idea and "directed her staff to further pursue the logistics to creating a dental clinic".

“We have met people who are ashamed to smile, and that’s embarrassing. Their self-worth is lowered. Their ability to interact with people is diminished, and their ability to apply for a job is diminished,” says Fleece. Add to that people who cannot tell you if they are suffering from pain associated with poor dental care and whose pain is often misinterpreted as bad behavior or just taken for granted as another manifestation of their disability. The need for a new clinic is certainly justified.

Harbor House Video : Homes for adults with severe multiple impairments

                        

Harbor House Ministries is a faith-based non-profit organization in Jenison, Michigan, west of Grand Rapids. It provides homes for adults with severe developmental disabilities in three spacious 12-bed group homes. Harbor House also has a large activity center with a therapy pool and many planned community outings and events.

From the Harbor House Web site: "Founded by families of adults with severe impairments, we know that family members are the best advocates for any individual. We work hard to maintain an atmosphere where family is valued and welcome all the time. We seek not to replace, but to partner with families in providing the best care and enriching environment possible."

More on Harbor House from The DD Newsblog.