Voice of the Retarded (VOR) represents individuals with mental retardation and their families. We are the only national organization which supports a full continuum of care options available to people with mental retardation, including own-home, community-based supports, and Intermediate Care Facilities for the Mentally Retarded (ICFs/MR).

Guiding Principles

In considering barriers to community-placement and expansion, HHS is cautioned not to forget about individuals with severe and profound mental retardation who also experience behavioral and/or medical challenges and who require and desire support in Intermediate Care Facilities for the Mentally Retarded (ICFs/MR).

While the Olmstead decision clearly endorsed community-based care for some people with mental retardation, it also cautioned against forcing such option on those who do not desire it and who require more intensive settings: "We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." Olmstead v. L.C., 119 S. Ct. 2176, 2189 (1999).

Finally, nothing in the Olmstead decision negates the legally-established role of family members and guardians of people with mental retardation as primary decisionmakers regarding services, supports and policies impacting their loved one=s care.

To ensure that this fragile population and their service needs are not eliminated in the quest to expand and improve community-based options for those individuals who desire and require community-based care, HHS should place in writing a commitment to the ICFs/MR option. Furthermore, HHS should establish a written policy against offering federal grants which fund deinstitutionalization activities. Clear and written federal support for choice in residential options is needed.

Barriers that impede opportunities for community placement and recommendations

The greatest impediments to community placement and expansion include lack of access to necessary quality health care (medical, dental, and therapies) and other services; and quality concerns in community-based settings.

Lack of access to necessary health care and other services can be corrected by making available the expertise at existing ICFs/MR settings to non-resident individuals with mental retardation and developmental disabilities. Successful models exist. The U.S. Department of Health and Human Services is encouraged to proactively support such models by providing information to existing providers and by offering enhanced federal funding, through, for example, the home and community-based waiver program.

Federal support for medical and dental school curriculum dealing with disability issues would also work to encourage developmental medicine and dentistry specialists in community-based clinics.

Access to quality community-based supports can further be enhanced by developing uniform standards for reporting sentinel events, as well as addressing the need for higher reimbursement rates, higher wages and increased training for community-based direct support care staff. Current efforts in this arena by the Center for Medicare and Medicaid Services (CMS) (i.e., The Protocol) are to be applauded and expanded.

For more information regarding the above comments, please contact:

Tamie Hopp, Executive Director  
5005 Newport Drive, Suite 108  
Rolling Meadows, IL 60008  
605-399-1624 phone  
605-399-1631 fax  
vor@compuserve.com

Center of Excellence (Community Resource Center) Proposal
Mark Diorio, Ph.D., Director  
Northern Virginia Training Center  
9901 Braddock Rd.  
Fairfax, VA 22032-1941  
703-323-4002  
703-323-4252 fax  
mdiorio@nvtc.state.va.us  

Physician Training/Medical School  
Philip May, M.D., Director  

Developmental Medicine Program  
Department of Medicine  
UMDNJ/Robert Wood Johnson Medical School  
New Brunswick, NJ 08903-0019  
908-235-7737

VOR Comments to the U.S. Health and Human Services  
in response to Executive Order 13217

(the Olmstead Executive Order)

[Executive Summary]

1. Introduction

Voice of the Retarded (VOR) represents individuals with mental retardation and their families. We are the only national organization which supports a full continuum of care options available to people with mental retardation, including own-home, community-based supports, and Intermediate Care Facilities for the Mentally Retarded (ICFs/MR).

VOR respectfully offers the following comments in response to Federal Register Notice, Vol. 66, No. 145, 39171-72. As required by the notice, these comments focus on the overall objective to "identify affected populations, improve the flow of information about supports in the community, and remove barriers that impede opportunities for community placement." Within these broad parameters, VOR's comments will also consider the "appropriate role of the federal government to promote the ability of people with disabilities to live more independently in the community (close to families and friends), to engage in productive employment, and participate in community life."

II. Guiding Principles

In considering reform, we encourage HHS to adhere to certain guiding principles. These include:

A. The Olmstead Executive Order at Sec. 1(d), citing the holding in Olmstead, indicates that institutional placement remains proper whenever treatment professionals so determine; when the individual concurs; and when the affected state can reasonably accommodate the placement.

            B. While the Olmstead decision clearly endorsed community-based care for some people with mental retardation, it also cautioned against forcing that option on those who do not desire it and who require more intensive settings:

"We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." 119 S. Ct. 2176, 2187 (1999).

"The ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. . .Each disabled person is entitled to treatment in the most integrated setting possible for that person -- recognizing on a case-by-case basis, that setting may be an institution" [quoting VOR's Amici Curiae brief]. 119 S. Ct. at 2189.

            C. Nothing in the Olmstead decision negates the legally-established role of family members and guardians of people with mental retardation as primary decisionmakers regarding services, supports and policies impacting their loved ones care.

4. The Olmstead Executive Order expressly recognizes that individuals with disabilities will have different needs requiring different residential settings:

"Specifically, designated agencies should work with States to help them assess their compliance with the Olmstead decision and the ADA in providing services to qualified individuals with disabilities in community-based settings, as long as such services are appropriate to the needs of those individuals." (Olmstead Executive Order, Sec. 2(a), emphasis added).

III. Identifying affected populations

A. The Olmstead decision has been interpreted to apply to all persons with disabilities. VOR's comments will be limited to its constituency: Persons with mental retardation and their families.

            B. The population with mental retardation includes people with varying and unique needs. Consistent with the guiding principles noted above, any policy impacting this population must consider the full continuum of needs. For example, there are a great many people with mental retardation who are thriving in community-based settings. In addition, many people on waiting lists for services desire and would be best served in community-based settings. There are also people with mental retardation, however, whose severe conditions require the close care found in an ICF/MR setting. These individuals are not best served in community-based settings.

        C. Individuals presently receiving ICFs/MR support are typically those who are profoundly cognitively impaired, with severe and challenging behavior issues, with dual diagnosis, or are medically fragile. Consistent with Olmstead, this population and their needs must not be neglected as federal agencies consider expanding community-based options for others.

HHS should establish a written policy against offering federal grants which fund deinstitutionalization activities. Since January 2000, HHS has sent five "Olmstead Updates" in a series of letters to State Medicaid Directors. HHS has asked that states consider their long term care policies to ensure compliance with the Olmstead decision. It has not been made clear by HHS directives that a continuum of services which includes the choice of ICFs/MR is supported by HHS. For example, in Update No. 5,@ January 10, 2001, p. 23 states, "We encourage States to explore and develop flexible funding arrangements that would allow a shift from institutional care to home and community-based services, thereby enabling adequate funding to follow the individual."

To ensure that this fragile population and their service needs are not eliminated in the quest to expand and improve community-based options for those individuals who desire and require community-based care, HHS should place in writing a commitment to the ICFs/MR option. Clear and written federal support for choice in residential options is needed.

IV. Improve the flow of information about supports in the community, and remove barriers that impede opportunities for community placement

The greatest impediments to community placement and expansion include lack of access to necessary quality health care (medical, dental, and therapies) and other services; and quality concerns in community-based settings.

1. Lack of access to necessary quality health care (medical, dental and therapies) and other services

i. Concerns

Research consistently shows that access to quality health care is a challenge for people with mental retardation.[1] Lack of access to quality health care services (including medical, dental, equipment, and therapies) negatively impacts an individual=s quality of life and life expectancy. Increased community-populations are under-served by existing community-based health care services.

Direct care workers are often not adequately trained to recognize health care needs and fail to take appropriate action (see Section IV (B)(ii), of these comments), and community health care providers are often not adequately trained and/or willing (i.e., due to low reimbursement levels, bias, communication challenges, waiting room disruptions, etc.) to serve people with mental retardation. These factors have resulted in long waiting lists, delay of needed services, inappropriate services, or no services.

As institutions close, the trained health care professionals (dental, medical, and therapeutic professionals) disburse and the expertise is lost. Community-based health care professionals tend to be isolated from one another and do not specialize in treating people with mental retardation. Lack of coordinated communication and networking negates the opportunity for those with expertise (i.e., ICFs/MR-based professionals and medical school representatives) to teach community-based health professionals and medical students.

Finally, managed care's goal of better coordinating services to enhance access is defeated when the charge of coordination is placed in the hands of a primary care physician who is not trained or is not willing to fully understand the complex health care needs of some people with mental retardation.

ii. Recommendations

The common theme in the above concerns is the lack of availability of community-based health care professionals trained and willing to serve people with mental retardation, and the reality that aggressive deinstitutionalization has exacerbated this crisis. VOR, therefore, offers the following recommendations for HHS:

(a) Promote federal funding (i.e., waiver dollars, grant incentives, etc.) to states establishing ACenters of Excellence@ programs which allow individuals with mental retardation receiving community-based residential supports to access health care (medical, dental and therapies) and other services now offered at ICFs/MR .

A A Center of Excellence is one that provides specialized medical, behavioral, dental, and respite services to individuals living in the community. A Center of Excellence will also provide training to staff of community providers and community-based clinicians, and establish formal relationships with universities to provide specialized training opportunities for students.

Large private and public ICFs/MR are ideally-suited to serve as Centers of Excellence. ICFs/MR currently accommodate residents= health, dental, therapy and other service needs on-site. Many of the professionals in ICFs/MR have long tenures working exclusively with individuals with mental retardation. Many of these ICFs/MR are located in rural areas, making access to quality health care and other services that much more challenging for community-based residents.

The Northern Virginia Regional Community Support Clinic (RCSC) is one such Center of Excellence now in operation. Coordinated through Northern Virginia Training Center (NVTC), the RCSC is an innovative outpatient program that provides clinical services to consumers of the five (5) Northern Virginia Community Services Boards. The RCSC also provides training to community staff and has relationships with 23 regional universities to provide internships and practica to students interested in providing clinical services to individuals with special needs. In FY 2001, RCSC served 352 non-resident clients, devoting over 1750 hours to their health care needs. 41% of these people were referred for multiple, complex services indicating a need for a more sophisticated level of nursing supervision and medically-oriented case coordination and management than was available in the community. For more information, please contact Mark Diorio, Ph.D., Director, Northern Virginia Training Center, 9901 Braddock Rd., Fairfax, VA 22032-1941; 703-323-4002; 703-323-4252 fax; mdiorio@nvtc.state.va.us.

Other states have also embarked on ACenters of Excellence@ models:

! Massachusetts: The Regional Evaluation and Assessment for Community Habilitation (REACH) Clinic operates out of the Hogan Developmental Center north of Boston providing specialized assessments and reassessments for clients living in community-based settings or in their family homes. Referrals are made by Case Managers who work from Area Offices scattered around the Northeast Region of the state. These referrals are reviewed by the REACH team which meets monthly. Clinical Directors from each of the four Area Offices have already screened cases in order to assure that services available in the community will not be duplicated. Cases are formally presented to the REACH Clinical Team including the Directors of Physical Therapy, Occupational Therapy, Speech Therapy, Audiology, Recreational Therapy, Assistive Technology, Recreational Therapy, and Adaptive Equipment. Area Office-based Social Service and Nursing staff also participate in the monthly meetings. Services ultimately provided include comprehensive or specialty-specific assessments. Staff develop program recommendations and provide on-site training of provider staff as well as some short-term direct interventions at the day program, community residence, or family home. The program seems plagued by budget and funding constraints which limit expansion to other regions of the state.

! Texas: Denton State School operates the North Texas Physical Management Center that constructs individualized wheelchairs, seating systems and other adapted equipment for residents and non-residents. In addition, Denton State School offers Dental Care, Respite Care, and employment opportunities and support to non-residents and residents. The facility is also host to practica/internship students in Speech Pathology, Psychology, Dentistry, Recreation, Music Therapy and others from local universities.

! Kentucky: The legislature has approved funding for the Underwood Clinic, a Center of Excellence based at Hazelwood ICFs/MR.

! Florida: Providers, academics and advocates have been considering two pilot special needs dentistry programs at Nova Southeastern and the University of Florida to address the lack of availability of dental care for Floridians with developmental disabilities.

ICFs/MR can also accommodate other needs and desires of people in community-based settings: Equestrian therapy programs, disability-friendly pools, gyms, special therapeutic equipment, sensory programs, and other services.

HHS support for the ACenters of Excellence@ model is needed. For example, possible federal funding may include special demonstration project grants, or through the Olmstead Systems Change grants. Regular Medicaid and Medicare can also be sources of funding through various avenues such as Outpatient Medical Clinics, Home Health Care benefits, etc. The Medicaid Home and Community-Based waiver is a very large source of potential revenue source for the Centers of Excellence model.

To accomplished system-wide implementation and acceptance, HHS must make visible its support for the model and also offer Medicaid, Medicare, or other federal financial support. HHS should host regional forums that encourage states to establish federally-funded Centers of Excellence to address unmet needs among people residing in community-based settings.

(b) Promote federal funding for medical and dental schools to offer developmental medicine and dentistry specialities. Suggestions include federally-required courses in developmental medicine or dentistry, loan forgiveness for physicians or dentists who establish a practice serving people with mental retardation, residencies in ICFs/MR, etc.

Long term planning demands consideration of the curriculum and experiences of medical students. Encouraging future health care professionals to pursue a career in developmental medicine will help ensure a higher quality community-based system of care.

Some states have considered such an agenda in their planning.

In 2000, the New Jersey legislature passed a law establishing a APhysician-Dentist Fellowship and Education Program to Provide Health Care to Persons with Developmental Disabilities.@ The purpose of the program is to provide physicians and dentists with graduate and fellowship training through academic institutions and continuing medical and dental education on a statewide basis. $2,500,000 was appropriated to fund this effort.

The State of California has established the Developmental Disabilities Health Information website (www.ddhealthinfo.org) to improve the health of persons with developmental disabilities by educating physicians and other health care providers about caring for this population. It is also designed to support persons with developmental disabilities and their families in making informed heath care decisions. The site also links to various medical information, including physician-to-physician consultation, educational opportunities for health care providers, lectures for continuing education credit, and other resources for professionals and families.

HHS is encouraged to promote federal funding for medical and dental schools to offer developmental medicine and dentistry specialities. Suggestions include federally-required courses in developmental medicine or dentistry, loan forgiveness for physicians or dentists who establish a practice serving people with mental retardation, residencies in ICFs/MR, etc.

HHS is also urged to encourage formal communication between university medical schools, teaching hospitals and ICFs/MR to help medical students gain experience working with people with mental retardation and even encourage specialties in developmental medicine. Research opportunities to better understand common health care concerns experienced by people with mental retardation would also be facilitated with this sort of partnership.

(c) Review Medicaid reimbursement rates and coverage for community-based physicians and dentists.  

HHS is encouraged to send a confidential survey to home and community-based waiver providers regarding their ability to provide quality services with the reimbursement rates they receive.

HHS is encouraged to send a confidential survey to community-based medical and dental providers to determine whether or not Medicaid reimbursement levels are a disincentive to serving Medicaid-eligible patients with developmental disabilities.

2. Quality Assurance concerns in community-based settings

VOR applauds the Center for Medicaid and Medicare Services= (CMS) recent initiatives related to quality in community-based waiver settings, especially AThe Regional Office Protocol for Conducting Full Reviews of State Medicaid Home and Community-Based Services Waiver Programs (January 2001) (The Protocol).

VOR encourages expanding these and other initiatives aimed at improving the quality of community-based services, with a particular focus on mandating the reporting of sentinel events and federal support (by policy and appropriation) for increased wage and training requirements of direct care workers.

i. Mandatory reporting of sentinel events

VOR believes that mandatory reporting of sentinel events (i.e., mortality, trips to the emergency room, fractures, etc.) is a necessary first step in the overall process necessary to monitor and address on-going quality concerns. Reporting of this nature develops trend information. For example, if a provider=s reporting statistics regarding fractures is lower than average, its program for preventing fractures could serve as a model for other providers.

The Protocol indicates that states must have Aprovisions for identifying, addressing and preventing abuse, neglect and exploitation of waiver participants,@ yet The Protocol does not address the reporting and disposition of critical (sentinel) incidents. Nonetheless, recent CMS compliance reviews in at least four states noted serious problems with the systems for prevention, reporting and follow-through in abuse, neglect and exploitation. Key to the findings was that the states, although they had a variety of activities around abuse and neglect, had no system that assured investigation and follow-through.[2]

VOR's research indicates that the Waiver=s enabling statute allows for consideration of reporting sentinel events in community settings via regulation. See for example,

Social Security Act C '1915(b)(2) A waiver shall not be granted under this subsection unless the State provides assurances satisfactory to the Secretary that --(A) necessary safeguards (including adequate standards for provider participation) have been taken to protect the health and welfare of individuals provided services under the waiver and to assure individual accountability for funds expended with respect to such services.

VOR recommends further amendment to The Protocol, or other regulatory revision, to mandate the reporting of sentinel events by providers of home and community-based services waiver. VOR stands ready to work with CMS to advocate for the necessary changes.

ii. Federal support for increased wages and training for direct care workers, and federal guidelines for hiring qualified staff.

A May 2001 report indicates that Athe current difficulties in assuring adequate direct support staff recruitment, retention and competence are widely reported as the single biggest barrier to the growth, sustainability, and quality of community services for people with developmental disabilities[3]. The report begins its AFinding Solutions@ section by stating --

AThe direct support workforce crisis is real and complex. It will not get better without serious attention, involving all aspects of the service system engaged in multifaceted solutions. These solutions demand immediate, comprehensive and focused intervention that includes not only service provider agencies, but also the federal and state agencies which too often view this system problem as belonging to those who provide services. Without involvement of all responsible entities, direct support staff recruitment, retention and training in community human services will be an increasing insurmountable problem of growing significance to the opportunities of Americans with disabilities.

HHS is encouraged to consider the development of uniform hiring (i.e, mandatory background checks), training and wage standards for direct care employees of community-based settings, perhaps as an extension of The Protocol, discussed above. Any such mandates to states must be accompanied by adequate federal funding.

For more information regarding the above comments, please contact:

Tamie Hopp, Executive Director
5005 Newport Drive, Suite 108
Rolling Meadows, IL 60008
605-399-1624 phone
605-399-1631 fax
vor@compuserve.com

Center of Excellence Proposal
Mark Diorio, Ph.D., Director
Northern Virginia Training Center
9901 Braddock Rd.
Fairfax, VA 22032-1941
703-323-4002
703-323-4252 fax mdiorio@nvtc.state.va.us.

Physician Training/Medical School
Philip May, M.D., Director
Developmental Medicine Program
Department of Medicine
UMDNJ/Robert Wood Johnson Medical School
New Brunswick, NJ 08903-0019
908-235-7737