Wednesday, December 23, 2015

The DD Act Purpose : Promoting DD Act Goals

This is an annotated version of the “purpose” of The Developmental Disabilities Assistance and Bill of Rights Act of 2000 with my comments. The way the purpose is stated affects the meaning and interpretation of the DD Act, for better and for worse. [See this section (Sec.101b) of The DD Act in its regular form and format here.]

PURPOSE.—The purpose of this title is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs authorized under this title, including specifically—

[The overall purpose of the DD Act is to promote self-determination, independence, productivity, integration, and inclusion in community life for people with DD, to assure participation in the design of promotional activities by individuals and their families, and to assure that individuals and their families have access to services, supports, and other assistance that promote the purpose of the DD Act. The activities promoted are those stated by the federal mandate with the allocation of funds going to DD Act programs. The DD Act does not provide direct funding to pay for services to individuals or their families except when this occurs incidentally in DD Act program activities. The DD Act does not contemplate how the purpose of the Act applies to people with developmental disabilities who, because of their disabilities, are unable to achieve the goals that are being promoted.]

To continue, “…including specifically —”

State Councils on Developmental Disabilities in each State to engage in advocacy, capacity building, and systemic change activities that— 

  • are consistent with the purpose described in this subsection and the policy described in subsection (c); and 
  • contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families;    
[Note again, that the “comprehensive system” is to promote the goals described in The DD Act, without mention of the possibility that individual goals may differ from those described.]

Protection and Advocacy systems in each State to protect the legal and human rights of individuals with developmental disabilities;

University Centers for Excellence in Developmental Disabilities Education, Research, and Service— 

1. to provide interdisciplinary pre-service preparation and continuing education of students and fellows, which may include the preparation and continuing education of leadership, direct service, clinical, or other personnel to strengthen and increase the capacity of States and communities to achieve the purpose of this title;

2. to provide community services— 

  • that provide training and technical assistance for individuals with developmental disabilities, their families, professionals, paraprofessionals, policy-makers, students, and other members of the community; and
  • that may provide services, supports, and assistance for the persons described in clause (i) through demonstration and model activities;
3. to conduct research, which may include basic or applied research, evaluation, and the analysis of public policy in areas that affect or could affect, either positively or negatively, individuals with developmental disabilities and their families; and

4. to disseminate information related to activities undertaken to address the purpose of this title, especially dissemination of information that demonstrates that the network authorized under this subtitle is a national and international resource that includes specific substantive areas of expertise that may be accessed and applied in diverse settings and circumstances; and

Funding for— 

  • national initiatives to collect necessary data on issues that are directly or indirectly relevant to the lives of individuals with developmental disabilities;
  • technical assistance to entities who engage in or intend to engage in activities consistent with the purpose described in this subsection or the policy described in sub-section (c); and
  • other nationally significant activities.

While we are on the topic, here is a breakdown of funding for DD Act Programs for Fiscal Year 2014, just to give an approximate idea of the amount of federal money spent on DD Act programs:

(Dollars in millions) 

State Councils on Developmental Disabilities                                      $70.692

Developmental Disabilities Protection and Advocacy                             38.634

University Centers for Excellence in Developmental Disabilities            36.674

Projects of National Significance                                                              8.821

Total Developmental Disabilities Programs:   $154.821

Detailed budget information on DD Act programs is available on the Website for the Administration on Intellectual and developmental disabilities (AIDD).

Thursday, December 17, 2015

Michigan releases revised HCBS Transition Plan for public comment

This is a Press Release from the Michigan Department of Health and Human Services. Public comments on the revised Transition Plan will be accepted through January 22, 2016. The revised plan will be submitted to the Centers for Medicare and Medicaid Services by February 29, 2016.

FOR IMMEDIATE RELEASE: December 16, 2015
CONTACT: Jennifer Eisner, (517) 241-2112

MDHHS releases revised Statewide Transition Plan for Home and Community-Based Services

LANSING, Mich. – The Michigan Department of Health and Human Services provides home and Community-Based Services to individuals in the Medicaid program. These services help Michigan citizens with disabilities or other health issues to live at home or in the community. Michigan offers many of these services through waivers, which were approved by the Centers for Medicare & Medicaid Services (CMS).

CMS recently released a new rule for Home and Community-Based Services waivers to promote enhanced quality of services and personal protections. MDHHS has five 1915(c) waivers that are impacted by the final rule:

  • Children’s Waiver Program
  • Habilitation Supports Waiver
  • MI Choice WaiverMI 
  • Health Link HCBS Waiver Program 
  • Waiver for Children with Serious Emotional Disturbances
MDHHS developed a Statewide Transition Plan to outline the implementation process for this rule. The Department recently revised its Statewide Transition Plan based on feedback from the Centers for Medicare and Medicaid Services. The revised Statewide Transition Plan can be found on the MDHHS Home and Community-Based Services Program Transition page

Any comments regarding the proposed Statewide Transition Plan covered by this public notice, or request for a written copy, may be submitted in writing to or by mail to:

Attention:  Medicaid Policy
Program Policy Division,
Bureau of Medicaid Policy and Actuarial Services
Michigan Department of Health and Human Services
P.O. Box 30479
Lansing, Michigan 48909-7979

The revised Statewide Transition Plan is a draft and will be updated as needed until Feb. 29, 2015, when the plan will be submitted to CMS for approval. MDHHS will accept public comments until Jan. 22, 2016.

Wednesday, December 16, 2015

The Individual Program Plan Under Fire : What every Parent and Guardian Must Know

The Individual Program Plan (IPP) Under Fire: Three Things Every Parent and Conservator Must Know from Autism Society SF Bay Area on Vimeo.

I am generally critical of the ARC and its reputation nationally for imposing its ideology of full inclusion on people with disabilities and their families regardless of need or individual circumstance. This presentation, however, by Barbara Maizie, Executive Director of the ARC of Contra Costa County, California, and a member of Keeping the Lanterman Promise on the importance of the Individualized Program Plan (IPP) is the best I have ever seen. It was part of the Autism Society San Francisco Bay Area's 2015 Conference, "Let a Thousand Flowers Bloom: The Bay Area Adult Autism/DD Programs and Housing Summit." The conference took place October 23, 2015 at Santa Clara University and featured more than 50 speakers.

In Michigan, the equivalent to the IPP is the Individual Plan of Service (IPOS) required by state law for everyone receiving  mental health services through the Community Mental Health system. Her message applies here and in other states that require DD services as an entitlement under protections in their state laws.

Update on Barbara Maizie: I had never met Barbara except through this video. Sadly, she was diagnosed with a brain tumor earlier this year and died on August 13, 2016. It makes me appreciate even more the influence that one person can have. 

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.

Saturday, December 12, 2015

Defining Intellectual Disability

The term “intellectual disability” replaces the term “mental retardation”. In the campaign to banish the “R-word”, it sometimes seemed advocates wanted to banish “mental retardation” entirely, but the condition did not magically go away.

Surprisingly, the term “intellectual disability” is not defined by the DD Act.

The definition that is often referred to when doing a search for “intellectual disability”, comes from the American Association on Intellectual and Developmental Disabilities (AAIDD):

Definition of Intellectual Disability

Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the   age of 18.

Intellectual Functioning

Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on.

One way to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.

Adaptive Behavior

Adaptive behavior is the collection of conceptional, social, and practical skills that are learned and performed by people in their everyday lives. 

  • Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
  • Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
  • Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.
Standardized tests can also determine limitations in adaptive behavior.

Age of Onset

This condition is one of several developmental disabilities—that is, there is evidence of the disability during the developmental period, which in the US is operationalized as before the age of 18.

Additional Considerations

But in defining and assessing intellectual disability, the AAIDD stresses that additional factors must be taken into account, such as the community environment typical of the individual’s peers and culture. Professionals should also consider linguistic diversity and cultural differences in the way people communicate, move, and behave.

Finally, assessments must also assume that limitations in individuals often coexist with strengths, and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period.

Only onthe basis of such many-sided evaluations can professionals determine whether an individual has intellectual disability and tailor individualized support plans.

This is additional information from the AIDD, “Frequently Asked Questions on Intellectual Disability”:

Is intellectual disability the same as mental retardation? Why do some programs and regulations still say mental retardation?
The term intellectual disability covers the same population of individuals who were diagnosed previously with mental retardation in number, kind, level, type, duration of disability, and the need of people with this disability for individualized services and supports. 

Furthermore, every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual disability.

While intellectual disability is the preferred term, it takes time for language that is used in legislation, regulation, and even for the names of organizations, to change.

Is intellectual disability the same as developmental disabilities?

"Developmental Disabilities" is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood. 

Developmental disabilities are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong.Some developmental disabilities are largely physical issues, such as cerebral palsy or epilepsy. Some individuals may have a condition that includes a physical and intellectual disability, for example Down syndrome or fetal alcohol syndrome.

 Intellectual disability encompasses the “cognitive” part of this definition, that is, a disability that is broadly related to thought processes. Because intellectual and other developmental disabilities often co-occur, intellectual disability professionals often work with people who have both types of disabilities.

Friday, December 11, 2015

QOTD: "The best lack all conviction..."

This is from The Second Coming by W.B. Yeats, 1919, written in the wake of World War I. This comes to mind after months of overexposure to Donald Trump.

Monday, December 7, 2015

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,, 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.

Saturday, December 5, 2015

The Inalienable Right to Disagree

This is from a new book by Sarah Vowell, "Lafayette in the Somewhat United States" that I happen to be reading:

(P. 25) “The thing that drew me to Lafayette as a subject—that he was that rare object of agreement in the ironically named United States—kept me coming back to why that made him unique. Namely, that we the people have never agreed on much of anything. Other than a bipartisan consensus on barbecue and Meryl Streep, plus that time in 1942 when everyone from Bing Crosby to Oregonian schoolchildren heeded FDR’s call to scrounge up rubber for the war effort, disunity is the through line in the national plot—not necessarily as a failing, but as a free people’s privilege. And thanks to Lafayette and his cohorts in Washington’s army, plus the king of France and his navy, not to mention the founding dreamers who clearly did not think through what happens every time one citizen’s pursuit of happiness infuriates his neighbors, getting on each other’s nerves is our right.

Friday, December 4, 2015

The DD Act : Defining Developmental Disability

To understand any piece of legislation, it is important to know how terms are defined and applied in particular situations. The DD Act of 2000 defines developmental disability, but your state may define it differently. In any programs under the DD Act, the federal definition is the one that should be used. Most state definitions that I have come across are identical to or close to the DD Act definition.

The term developmental disability has evolved over the years from one that included specific conditions - either “mental retardation” [now known as “intellectual disability”] or conditions closely related to “mental retardation” including cerebral palsy, epilepsy, autism, and dyslexia. Eventually, developmental disability was defined in functional terms, so that anyone whose disability results in substantial functional limitations in 3 or more areas of major life activity that is manifested before the age of 22 is a person with DD. It does not necessarily mean that the person has an intellectual disability or a condition related to intellectual disability although most people with severe intellectual disabilities are likely to also fit the definition of DD. [See the history of the act.]

This is the definition of developmental disability under the DD Act of 2000:

Title I — Programs for Individuals with Developmental Disabilities

Subtitle A — General Provisions

SEC 102 Definitions


A.  IN GENERAL.—The term “developmental disability” means a severe, chronic disability of an individual that—

    i.    is attributable to a mental or physical impairment or combination of mental and physical impairments;
    ii.    is manifested before the individual attains age 22;
    iii.    is likely to continue indefinitely;
    iv.    results in substantial functional limitations in 3 or more of the following areas of major life activity:

  • Self-care.
  • Receptive and expressive language.
  • Learning.
  • Mobility.
  • Self-direction.
  • Capacity for independent living.
  • Economic self-sufficiency; and
  • reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated. 

B.  INFANTS AND YOUNG CHILDREN.—An individual from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described in clauses (i) through (v) of subparagraph (A) if the individual, without services and supports, has a high probability of meeting those criteria later in life.

Other programs and services not covered by the DD Act may base eligibility or participation on a specific medical diagnosis, the income of the individual, or a combination of these or other factors.

Thursday, December 3, 2015

Aging Out : Documentary on the lack of services for autistic adults

This is the trailer for a documentary, "Aging Out", by filmmaker and parent Melissa Collins-Porter, which is about the crippling lack of services available to young autistic adults once they reach the age of 21.

What is the Developmental Disabilities Act and why does it matter?

In my experience, most families of people with developmental disabilities have either never heard of the DD Act or have only a vague notion of what it is and how DD Act programs affect them.

One of the more surprising facts about the DD Act is that it does not fund direct services to people with developmental disabilities. Funding for DD Act programs may incidentally provide services to people with disabilities and their families through, for instance, pilot programs or training and education, but funding is primarily focused on advocacy, “systems change”, research, and support for organizations and agencies that promote the goals of the DD Act.

The Developmental Disabilities Assistance and Bill of Rights Act of 2000, a.k.a. the DD Act, is a federal law that grew out of “mental retardation” laws from the 1960s that were designed to improve conditions of care in state institutions and expand opportunities for people who historically faced exclusion from schools and many other community activities.

Information on the history of the DD Act and the programs that it currently funds is available on the website for the Administration on Intellectual and Developmental Disabilities. The AIDD is part of the Administration for Community Living (ACL) under the U.S. Department of Health and Human Services.

DD Act programs include: 

  • State Councils on Developmental Disabilities that are “…federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives."
  • State Protection & Advocacy Systems (P&As) “…work at the state level to protect individuals with developmental disabilities by empowering them and advocating on their behalf. There are 57 P&As in the United States and its territories, and each is independent of service-providing agencies within their states.”
  • University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) are affiliated with universities and "...receive a discretionary grant that is awarded to interdisciplinary education, research, and public service units of universities, or public or nonprofit entities associated with universities. AIDD funding is used to support the organizational foundation of UCEDDs, which allows the grantees to pursue other sources of support to conduct various activities. UCEDDs leverage funding from a variety of sources, including federal, state, and local agencies; private foundations; donations; and fee-for-service earnings."
  • Projects of National Significance (PNS) ",,,focus on the most pressing issues affecting people with developmental disabilities and their families, creating and enhancing opportunities for these individuals to contribute to, and participate in, all facets of community life." 
  • Family Support Programs are designed to "...promote and strengthen implementation of comprehensive state systems of support services for family members providing care. Congress first allocated funds directly to the program beginning in 2008, although PNS funds had been used for Family Support initiatives in prior years."  
  • Direct Support Workforce is a program included in the DD Act " increase the workforce serving people with developmental disabilities." However, Congress has not provided direct funding for this program. "...PNS funds have been used for an online training course for direct support workers, the College of Direct Supports, which is used as a resource by agencies and states."
One problem with the DD Act of 2000 is that, although the law was scheduled for reauthorization in 2007, Congress has not taken a close look at it in fifteen years. Reauthorization is an occasion for Congress to review, investigate, and hold hearings on federal legislation to determine the effectiveness of the law, whether it is achieving the desired effects, and whether it should  continue as is or be changed and improved. It is also a chance for people directly affected by the law and the general public to participate in advising Congress on their experiences and recommendations for change. Instead, the DD Act remains unchanged, while appropriations are approved every year without the benefit of more intensive scrutiny and  oversight. 
For detailed information, see:
  • The Developmental Disabilities Assistance and Bill of Rights Act 
  • The DD Act of 200 Final Rule: The rule making process for implementing the DD Act of 2000 began in 2008. The opportunity to comment on the Rule closed in September 2008, but the final rule did not gain approval by the AIDD until 2015. [To be clear, anyone can comment on any government policy whenever they choose to do so. The formal comment period is a time in which there are specific requirements for government agencies to consider comments from the public and respond to them.]  It is hard to tell if this delay was because of the controversy surrounding some of the DD Act programs or other factors within the administration of the Departmcent of Health and Human Services.  
  • DD Act Rule Toolkit: More information on the implementation of the DD Act Rule and the network of DD Act programs and “Technical Assistance Providers”.
Coming soon: The definition of Developmental Disabilities and the much overlooked Bill of Rights for people with developmental disabilities.

Tuesday, December 1, 2015

Kentucky: New regs require national background checks for employees caring for vulnerable populations

 See Update below!

This is a press release from the office of Governor Beshear of Kentucky:

Commonwealth of Kentucky
Office of the Governor

Terry Sebastian

Jennifer Brislin

Gov. Beshear Implements Mandatory National Background Checks for Nursing Home Employees, Others Caring for Kentucky’s Most Vulnerable Adults 

FRANKFORT, Ky. (Nov. 20, 2015) – Governor Steve Beshear today announced that he has signed an emergency regulation requiring certain health care providers to obtain national criminal background checks on new employees and other individuals who provide direct one-on-one care to elderly residents or patients in order to obtain or renew the facility’s license to operate in the Commonwealth.

Effective Jan. 1, 2016, approximately 1,300 providers will be required to obtain national background checks for all new employees. These providers include nursing homes, intermediate care facilities and Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID); adult day health care programs; assisted living communities; home health agencies; hospice; personal services agencies; providers of home and community-based services; personal care homes; and staffing agencies, including nursing pools that have contracts to provide staff to one or more of the listed employer types.

“Protecting the elderly and other individuals residing in these facilities is not only important – it is our duty as state leaders,” said Gov. Beshear. “All too often, these vulnerable citizens become victims of the very individuals who are supposed to be caring for them. This regulation, based upon a federal law allowing these background checks, will ensure we are able to thoroughly track the history of anyone who has committed such an offense, whether it occurred in Kentucky or out of state, and ensure they will not be working at health care facilities in the Commonwealth.”

Prior to utilizing this federal law, state law required only name-based, Kentucky-specific background checks, creating a loophole that allowed applicants seeking employment in these long-term care and other settings to hide criminal actions committed in other states. Meanwhile, the prevalence of alleged abuse or exploitation of seniors in these settings remained significant. Since May 2014, more than 2,600 total complaints have been lodged against long-term care providers, nearly 30 percent of which were directly related to suspected abuse or exploitation of residents.

“By requiring fingerprint-supported background checks that search for both state and federal FBI criminal records, applicants will not be able to hide criminal actions committed in other states,” said Cabinet for Health and Family Services Secretary Audrey Tayse Haynes. “National background checks are a critical initiative that dramatically improve the ability of long-term care and other providers to timely and accurately research the backgrounds of potential employees, ruling out individuals with histories of violence, abuse or exploitation that occurred in other states.”

Since receiving an initial federal grant in 2011 from the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services (CMS), the Cabinet for Health and Family Services (CHFS) Office of Inspector General implemented the Kentucky Applicant Registry and Employment Screening background check program, also known as KARES, and offered the statewide program on a voluntary basis with 35 fingerprint scanners located in Kentucky.

KARES was recently awarded an additional $689,000 in CMS grant funding to add 35 more fingerprint scanners throughout Kentucky, bringing the total number of scanner locations to 70.

“This program improves resident and patient safety and promotes a higher quality of care,” said CHFS Inspector General Maryellen Mynear. “The electronic program has now been fully tested by voluntary participants over the last 18 months, and the feedback has been overwhelmingly positive regarding its ease of use, cost effectiveness and speed. Our office will assist providers as they apply for initial licensure or renew their existing license to ensure a smooth and timely transition to a national criminal background check program that meets the requirements of this regulation.”

In signing the regulation, Gov.  Beshear noted the success of KARES. The electronic program has been operational since May 2014 on a voluntary basis and allows employers to perform all necessary background checks – from professional licenses to abuse registries to both state and federal criminal databases – in one step through electronic fingerprinting.  The program significantly reduces the time required to complete a background check, and in most cases returns results in 24 to 72 hours, compared to three or more weeks using the traditional paper-based background check process.

“I’m glad we are taking this step to protect Kentucky’s seniors,” said Rep. David Watkins, of Henderson.  “Those being cared for or recovering in long-term care facilities need as many protections as we can provide. This system will help make sure those seeking employment caring for our loved ones don’t slip through the cracks between law enforcement agencies and have been thoroughly checked out.”

“This is an important step in protecting our loved ones in care facilities,” said Rep. Linda Belcher, of Shepherdsville. “I have been working on legislation to accomplish this for some time now and am very pleased Gov. Beshear has taken this step to further protect the elderly residents and patients.”

“Our senior citizens and our disabled citizens are especially vulnerable to abuse and it is up to us to protect them,” said Sen. Denise Harper Angel, of Louisville.  “As a legislator, I have been committed to putting in place stronger safeguards to protect our most at-risk citizens. I am pleased that Gov. Beshear is implementing mandatory national background checks for nursing home employees and other caregivers – legislation that I have long been an advocate.”

“I commend Gov. Steve Beshear for this action to provide protections for our senior citizens,” said Sen. Tom Buford, of Nicholasville.

Kentucky State Police Commissioner Rodney Brewer said KSP maintains the criminal history repository on behalf of the Commonwealth and has partnered with CHFS to provide pertinent information for this initiative.

“The KARES program is an excellent example of state government agencies working together to safeguard Kentucky’s elderly citizens,” Commissioner Brewer said.  “We will utilize technology in any way possible to deliver real-time information for citizens who are vulnerable to abuse due to age and medical issues.”

Since its launch, the program has performed more than 2,200 background checks and has screened out applicants who had been convicted of serious violent offenses in other states but had no criminal history in Kentucky.

The program’s website is found at and contains provider enrollment information, general information for both providers and the public, frequently asked questions and links to related programs and content. Additional information can be obtained by contacting the program’s help service via email, or by telephone at 502-564-2159.

[Gov. Beshear’s press releases are available on his official website at]

Update: December 4, 2015
From the VOR Weekly News Update for November 27, 2015: 

Governor-Elect Bevin takes office on December 8th. You have an opportunity to speak to his transition team and let them know you want him and his administration to support mandatory national background checks for state caregivers working in nursing homes, intermediate care facilities and Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID); adult day health care programs; assisted living communities; home health agencies; hospice; personal services agencies; providers of home and community-based services; personal care homes; and staffing agencies, including nursing pools that have contracts to provide staff to one or more of the listed employer types.
To support the continuation of these regulations, use the sample message below to create your own message to the transition term preferably before December 8th.

Email Address of Transition Team:

Support Mandatory National Background Checks for Nursing Home Employees and Others Caring for Kentucky’s Most Vulnerable Adults

Dear Bevin Transition Team,

We ask for your full support for the emergency and the companion administrative regulation that beginning on January 1, 2016 provides the mandatory protection of the KARES program to thousands of Kentucky’s most vulnerable citizens including our XXX (son, daughter, brother , sister, cousin, friend) .

Add any personal information like : Our XXX is unable to report acts of abuse, negligence or exploitation.


City, State, Zip

If you are not from Kentucky, you can still help. Write the governor-elect and tell them how mandatory background checks have helped in your state, and make it clear how vulnerable the I/DD population is.

If you would, please BCC: with your response!