New York: The NY Assembly Minority Task Force Report on Developmental Disabilities

The New York state Assembly, the lower house of the New York Legislature, is dominated by a 62 vote supermajority of Democrats. The Assembly Minority (Republican) Task Force on Protecting the Rights of People with Developmental Disabilities has recently issued a report based on the testimony of parents, people with disabilities, advocates, service providers and other interested parties on services for people with developmental disabilities in New York state. Forums were held at eleven sites throughout the state, attracting crowds of 25 to 85 people who came to have their say on problems they had experienced with the service system for people with DD.

The task force heard a diversity of opinions representing people with varying degrees of disability and need for services. The name of the report is C.A.R.E.S. (Championing Aid, Rights, Equality, and Services: a Report on the Olmstead Decision & Its Impact on the State’s Developmental Disability Community). A number of complaints centered on the state’s misinterpretation of the 1999 U.S. Supreme Court Olmstead decision. Many families and advocates for choice have been criticizing the use of Olmstead as a weapon to close programs and services that are considered “too institutional” by some, but are nevertheless highly valued and needed by a significant portion of the DD population and their families. The C.A.R.E.S. report addresses this issue at both the state and the federal level and calls for the state to revaluate its interpretation.

The recommendations that come out of the report are a logical and compassionate response to the problems that are heard again and again in many areas of the country: preserve, restore, and expand the services that people with DD want and need, compensate service providers with the funds they need to provide the best possible services, pay direct care workers enough to maintain a high quality and sustainable work force, and protect the rights of all people with DD to appropriate levels of service based on their needs and preferences.

I question why these recommendations come only from the minority in the legislature and why they are not at least bipartisan, if not universally supported by legislators who have surely heard from some of their constituents about the growing problems within the DD system of services. 

**************************************

The following is the Executive Summary from the C.A.R.E.S. report: 

EXECUTIVE SUMMARY

The Assembly Minority Task Force on Protecting the Rights of People with Developmental Disabilities was formed in response to numerous calls and complaints from constituents to members of the Assembly Minority Conference concerning the announcement by the governor that sheltered workshops would be closed in order to bring New York State into compliance with the federal Department of Justice’s interpretation of the U.S. Supreme Court’s Olmstead Decision. The term sheltered workshop refers to an organization or environment (typically a business) that employs people with disabilities in a “sheltered” environment. The overarching decision required states to place persons with mental disabilities in community settings rather than in institutions. However, people have argued, there were several factors to the requirement of moving individuals to community settings that state governments, including New York, have overlooked. With this in mind, the Assembly Minority Conference conducted a series of statewide hearings to gather information from parents, service providers and individuals with developmental disabilities to determine if there are policy changes that can be made or new laws that can be enacted to help provide for people with developmental disabilities in the most caring and cost-effective manner possible.

Among those with firsthand experience, the belief that there has been a misinterpretation of the Olmstead Decision has caused a ripple effect throughout the developmental disability community as it pertains to the integration of employment and how individuals will find and get to employment outside of sheltered workshops. To meet the state’s requirements, sheltered workshops have changed their business models to incorporate non-disabled individuals into the workforce. This change has raised questions as to what happens to individuals in the developmental disability community who worked in these former sheltered workshops who can no longer perform their jobs in these facilities.

The deinstitutionalization requirements of the Olmstead Decision also impact housing for the developmental disability community. While many individuals live with their families, parents are concerned with what will happen to their children when they can no longer care for them or they should die. While New York State’s Office for People with Developmental Disabilities (OPWDD) conducted a survey of individuals who contacted the agency with concerns about housing for their family members, their findings do not seem to help those who are actually looking for housing. A prominent finding in the “Residential Request List” (RRL) report by OPWDD concludes that there is enough housing for the 11,000 who want housing statewide, but this may not benefit each individual locally.

Numerous issues were raised during the Task Force’s forums. This report outlines some of the major problems that the developmental disability community is dealing with, including jobs and housing; services for families; and salaries and compensation for those who work with individuals with disabilities.

******************************************************
Recommendations

This is a summary of the recommendations of the Minority Task Force from the Website of Assemblyman Clifford Crouch, Chairman of the task force:

• Requiring the Attorney General to reevaluate the state’s interpretation of the Olmstead Decision. 
• Working with the federal government to prevent the state from losing funding as a result of the interpretation of the Olmstead Decision. 
• Create post-schooling training programs for individuals with developmental disabilities to better prepare them for employment. 
• Create incentives for sheltered workshops to hire individuals without developmental disabilities. 
• Create a Bill of Rights for Individuals with Developmental Disabilities to outline in statute their rights. 
• Fully fund the increase in minimum wage for direct care workers employed by non-profit providers. 
• Create a commission to study and report on what wage levels would need to be in order to recruit and retain an adequate number of qualified direct care workers in the various regions of the state, with a special focus on making sure that staffing levels are adequate for the transition to integrated employment. 

Crouch noted that New York State’s minimum wage is set to increase to $15 an hour in most parts of the state by 2021. The task force was concerned about the repercussions this could have on the developmental disability community’s direct care workforce.

The DD Act : "Findings" vs. Facts

The “Findings” of Congress listed in The Developmental Disabilities Assistance and Bill of Rights Act of 2000 [the DD Act ] are statements that presumably establish the need for advocacy, legal protections, research and other activities funded by the Act. Among the findings of Congress, however, are statements that are inconsistent with the defining characteristics of people with developmental disabilities. 

By definition, an individual with a developmental disability has a severe and chronic lifelong disability that results in substantial functional limitations in at least three major life activities. This population includes a spectrum of people ranging from those with severe physical limitations who have the full mental capacity to communicate and make decisions for themselves to those with profound physical and intellectual disabilities and high medical needs, as well as people with severe behavioral problems that may compromise their own safety and that of others. When any part of this spectrum is ignored or marginalized, the activities funded by the DD Act can result in harm based on false generalizations and a desire to avoid showing developmental disabilities in a “negative” light.

My sons, who are 30 and 39 years old, are at the most severe end of the spectrum of people with DD. I am particularly sensitive to attempts to minimize the severity of their disabilities to make them appear more capable than they are in the hopes that they will be more easily accepted or that legislators will be more willing to allocate funds for their care and support. Their inherent worth as human beings does not lie in proving that they have a capacity to be productive or independent. To deny the severity of their disabilities does them no favors and increases the likelihood that they will not get the care that they need and that public policy decisions will be made without consideration of the full range of disabilities among the DD population.

Congress has been selective in what it chooses to “find” to justify federal involvement in advocacy for this vulnerable population and the type of advocacy that it will fund.

Here is a the first finding that is listed in the DD Act:

“…disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social cultural, and educational mainstream of United States society…”

While many people with DD have limitations that may be overcome with appropriate supports, others will not be able to overcome their functional limitations any more than they can wish away their disabilities. To include this statement without qualification as a “finding” has contributed to the controversial activities of some DD Act-funded programs that do not acknowledge the full range of disabilities and confuse “group rights” based on false generalizations about people with DD with “individual rights” that are protected by law.

Many of the findings of Congress do, in fact, accurately reflect the state of the system of services and care for people with DD over the full range of disability:

• individuals whose disabilities occur during their developmental period frequently have severe disabilities that are likely to continue indefinitely;
• individuals with developmental disabilities often encounter discrimination in the provision of critical services, such as services in the areas of emphasis (as defined in section 102);
• individuals with developmental disabilities are at greater risk than the general population of abuse, neglect, financial and sexual exploitation, and the violation of their legal and human rights;
• a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support and services, including access to assistive technology, from generic and specialized service systems, and remain unserved or underserved;
• individuals with developmental disabilities often require lifelong community services, individualized supports, and other forms of assistance, that are most effective when provided in a coordinated manner;
• there is a need to ensure that services, supports, and other assistance are provided in a culturally competent manner, that ensures that individuals from racial and ethnic minority backgrounds are full included in all activities provided under this title;
• in almost every State, individuals with developmental disabilities are waiting for appropriate services in their communities, in the areas of emphasis;

Here are more “findings” regarding families and communities and their role in caring for and supporting people with DD:

• family members, friends, and members of the community can play an important role in enhancing the lives of individuals with developmental disabilities, especially when the family members, friends, and community members are provided with the necessary community services, individualized supports, and other forms of assistance; [In my opinion, this does not go far enough in emphasizing the importance of families in the system of care and not just to “enhance” the lives of people with DD. Without the care, support, monitoring of care and services, financial support, and advocacy of families, the system would probably collapse.]
• current research [as of 2000] indicates that 88% of individuals with developmental disabilities live with their families or in their own households;
• many service delivery systems and communities are not prepared to meet the impending needs of 479,862 adults with developmental disabilities who are living at home with parents who are 60 years old or older and who serve and the primary caregivers of the adults; [these figures have probably increased substantially since 2000 with the aging of the caregiving population, the limitations on resources, and the poor quality of alternatives to remaining in the family home.]
• the public needs to be made more aware of the capabilities and competencies of individuals with developmental disabilities, particularly in cases in which the individuals are provided with necessary services, supports, and other assistance; [The public should also be aware of the diverse needs of people with DD and the importance of providing a full range of services, housing, and programs to meet their needs.]
• as increasing numbers of individuals with developmental disabilities are living, learning, working, and participating in all aspects of community life, there is an increasing need for a well trained workforce that is able to provide the services, supports, and other forms of direct assistance required to enable the individuals to carry out those activities;
• there needs to be greater effort to recruit individuals from minority backgrounds into professions serving individuals with developmental disabilities and their families.

Finally, Congress makes a giant leap in declaring that,

The goals of the Nation properly include a goal of providing individuals with developmental disabilities with the information, skills, opportunities, and support to—

• make informed choices and decisions about their lives;
• live in homes and communities in which such individuals can exercise their full rights and responsibilities as citizens;
• pursue meaningful and productive lives;
• contribute to their families, communities, and States, and the Nation;
• have interdependent friendships and relationships with other persons;
• live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights;
• achieve full integration and inclusion in society, in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of each individual;…

People with DD have varying degrees of ability and also vary in their capacity for making informed choices and decisions. Many, if not most people with DD, will not be able to fully or even partially overcome their disabilities, whether or not they are presented with opportunities, information, and support. “Skills” that allow someone to live independently, contribute to communities, achieve “full integration”, etc. are based on ability and by definition people with DD have major functional limitations. Many people find ways to compensate for disabilities in one area with abilities in another.  Accommodations and support may make these goals achievable for many people, but to make a sweeping generalization, without qualification, that the “goals of the Nation” are to “provide” people with abilities they may never have is both arrogant and ultimately harmful to people most in need of care, support, understanding, and protection.

I want everyone to “live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights”, but to presume that this can be achieved by providing individuals with severe disabilities with the skills to overcome their disabilities is not rational.

The DD Act : Rights of Individuals with Developmental Disabilities

Here is a link to the “Rights of Individuals with Developmental Disabilities” as a Word document from the DD Act of 2000. The following is my annotated version of the Bill of Rights.

IN GENERAL.—Congress makes the following findings respecting the rights of individuals with developmental disabilities...

These findings list "the rights of individuals with developmental disabilities” [emphasis added]. Some disability rights advocates have made assertions about group or collective rights of people with DD based on generalizations about their characteristics and capabilities. For instance, we often see the assertion that people with developmental disabilities have the right to live in “the community”, as opposed to an institution. This is generally true, unless the individual’s need for appropriate services in a safe and accommodating environment, i.e. an institution or other specialized setting, is preferable and less restrictive than living in an inadequate community setting that does not meet the individual's needs.

• Individuals with developmental disabilities have a right to appropriate treatment, services, and habilitation for such disabilities, consistent with section 101(c). [section 101(c) refers to the Policy and principles for carrying out programs and activities under the DD Act.]
• The treatment, services, and habitation for an individual with developmental disabilities should be designed to maximize the potential of the individual and should be provided in the setting that is least restrictive of the individual’s personal liberty.

The term habilitation is not defined in the DD Act, but the Website managed by the U.S. Centers for Medicare and Medicaid Services, HealthCare.gov, defines it as “Health care services that help you keep, learn, or improve skills and functioning for daily living. Examples include therapy for a child who isn't walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology, and other services for people with disabilities in a variety of inpatient and/or outpatient settings.”

The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that— 

provide treatment, services, and habilitation that are appropriate to the needs of such individuals;
 
and meet minimum standards relating to— 

• provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population;
• provision to such individuals of appropriate and sufficient medical and dental services;
• prohibition of the use of physical restraint and seclusion for such an individual unless absolutely necessary to ensure the immediate physical safety of the individual or others, and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program;
• prohibition of the excessive use of chemical restraints on such individuals and the use of such restraints as punishment or as a substitute for a habilitation program or in quantities that interfere with services, treatment, or habilitation for such individuals; and
• provision for close relatives or guardians of such individuals to visit the individuals without prior notice.

Notice that there is no assumption here that everyone will live “in the community” or that there are any restrictions on people with DD participating in programs in any particular setting, as long as the individual is provided with appropriate care and treatment and that there are prohibitions against certain kinds of mistreatment listed here. Also note, that close relatives and guardians are recognized as having a role in assuring the safety and well being of people with DD.

All programs for individuals with developmental disabilities should meet standards—

• that are designed to assure the most favorable possible outcome for those served; and
• in the case of residential programs serving individuals in need of comprehensive health-related, habilitative, assistive technology or rehabilitative services, that are at least equivalent to those standards applicable to intermediate care facilities for the mentally retarded, promulgated in regulations of the Secretary on June 3, 1988, as appropriate, taking into account the size of the institutions and the service delivery arrangements of the facilities of the programs;

in the case of other residential programs for individuals with developmental disabilities, that assure that—

• care is appropriate to the needs of the individuals being served by such programs;
• the individuals admitted to facilities of such programs are individuals whose needs can be met through services provided by such facilities; and
• the facilities of such programs provide for the humane care of the residents of the facilities, are sanitary, and protect their rights; and
• in the case of nonresidential programs, that assure that the care provided by such programs is appropriate to the individuals served by the programs.

Notice again that the emphasis is on appropriate care and services. The DD Act does not define appropriate, but most programs providing services to individuals with DD require an individual plan of services written with the participation of the individual with DD and his or her family and legal guardian, if there is one. This determination of specific services, care, and treatment, that includes the individual's right to appeal decisions they disagree with, should be considered a sufficient description of “appropriate” care and services.

And finally,

CLARIFICATION. —The rights of individuals with developmental disabilities described in findings made in this section shall be considered to be in addition to any constitutional or other rights otherwise afforded to all individuals.

The rights listed here do not in any way restrict the rights afforded to all individuals.

Michigan P&A seeks comments on priorities and goals

Michigan Protection & Advocacy Service, Inc. (MPAS) is the independent, private, nonprofit organization designated by the governor of the State of Michigan to advocate and protect the legal rights of people with developmental disabilities in Michigan. MPAS services include information and referral, short-term assistance, selected individual and legal representation, systemic advocacy, monitoring, and training.  The MPAS receives funds primarily through the federal Developmental Disabilities Assistance and Bill of Rights Act of 2000 (a.k.a The DD Act). 

The MPAS also provides federally-funded services to other disability groups. Here is a list of their programs.
 
MPAS seeks your input on their 2016 advocacy priorities and objectives.

Comments will be accepted through November 16, 2015 and should be sent via email to asteffen@mpas.org. 

Here is a link to the Priorities and Objectives in different formats - Word document, PDF, and Text file. These are the same as the priorities listed below.

***********************

MPAS Board approved Priorities available for public comment:

Priority #1:  Eliminate abuse and neglect

• Objective 1A:  Individuals with disabilities will not be subjected to restraint or seclusion.
• Objective 1C: Individuals with disabilities will not be subjected to abuse or neglect, including inappropriate or coercive treatments.

Priority #2:  Increase the protection of individual rights, independence and self-determination 

• Objective 2A: Individuals with disabilities will not be deprived of their rights and will be able to engage in self advocacy.

Priority 3:  Eliminate employment barriers and protect rights  

• Objective 3A:  Improve access and rights to services within vocational rehabilitation and centers for independent living 
• Objective 3B:  Individuals with disabilities will assert their employment rights under the ADA and/or Section 504, as well as other employment laws, e.g. Fair Labor Standards Act, and will have employment options in the competitive and integrated workforce.
• Objective 3C: Individuals with disabilities will have access to social security work incentives. Objective 3D:  Beneficiaries with disabilities will be free from exploitation, abuse, and neglect by their representative payee.

Priority 4:  Improve access to services  

• Objective 4A:  Individuals with disabilities will be assured services, including housing, transportation and assistive technology, identified to support them in the community and prevent institutionalization or segregation.   
• Objective 4B:  Governmental entities and providers of critical services will be accessible and provide needed accommodations. 
• Objective 4C:  Individuals with disabilities will have access to services, including assistive technology, which supports them in institutional/facility/service provider settings in order to promote discharge and community inclusion.

Priority 5:  Ensure the right to a high quality education  

• Objective 5A:  Students with disability-related behavior will be identified and evaluated for special education.
• Objective 5B:  Eligible students at risk of discipline or push-out due to disability-related behavior will remain in school. 
• Objective 5C:  Transition needs from post education to community living will be identified and addressed.  

[More information on Protection and Advocacy and the DD Act coming soon!]

********************
Update: Suggestions from the Coalition for Community Choice

Priority 4:  Improve access to services 
Objective 4A:  Individuals with disabilities will be assured services, including housing, transportation and assistive technology, identified to support them in the HOME AND COMMUNITY OF THEIR PREFERRED CHOICE AS EXPLORED AND DOCUMENTED IN THEIR PERSON CENTERED PLANNING PROCESS.

Objective 4B:  Governmental entities and providers of critical services will be accessible and provide needed accommodations.
 
Objective 4C:  Individuals with disabilities will have access to services, including assistive technology, which supports THEIR RETENTION OR TRANSITION TO A HOME AND COMMUNITY OF THEIR PREFERRED CHOICE AS EXPLORED AND DOCUMENTED IN THEIR PERSON CENTERED PLANNING PROCESS.