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date: 03 December 2022

# Intellectual Disabilities

• Leah IgdalskyLeah IgdalskyThe Lurie Institute for Disability Policy, School for Social Policy and Management, Brandeis University

### Summary

Social workers working with individuals with intellectual disabilities and their families require an understanding of the disabilities themselves as well as the larger context of disability in society. Individuals with disabilities face particular risks for poverty and poor healthcare, and it is essential for social workers to understand the complex web of social services available. Furthermore, social workers often work not only with the person with a disability but also with their caregiving families.

### Subjects

• Disabilities
• Human Behavior
• Research and Evidence-Based Practice

### Introduction

Social workers have long been engaged with children and adults with intellectual disabilities across the life span and often work with their caregiving families as well. This article defines intellectual disabilities, provides information about the history of services for this population, and presents past successes and future challenges. Services for and perceptions of individuals with intellectual disabilities have come a long way since the mid-20th century, when people began moving from isolated institutions into the community. Still, there is substantial work to be done in the fields of healthcare, poverty, and inclusion. An understanding of the issues associated with intellectual disabilities is essential for all social workers, regardless of their particular specialty. Disability affects many people directly or indirectly. As such, interdisciplinary practice and training are vital to ensure that people with intellectual disabilities are thought of and included by social workers across the board.

### Definition, Prevalence Prevalence, and Changing Terminology

Intellectual disabilities are impairments that originate at birth or during childhood and are accompanied by significant limitations in intellectual functioning and adaptive behavior (AAIDD, 2013). People with intellectual disabilities may have deficits in conceptual skills like language and self-direction, social skills like interpersonal skills and social problem solving, and the practical skills required for activities of daily living (AAIDD, 2013).

It is estimated that 1.58% of Americans have an intellectual disability (Larson et al., 2001). However, there are challenges to measuring the prevalence of intellectual disability, due to ambiguity in diagnosis, the difficulties locating individuals who are not receiving services, and changing diagnoses across a given individual’s life span. There are also different ways of classifying intellectual disabilities, based on functional limitations, services received, or other models.

A 2011 meta-analysis of international studies concluded the global prevalence of intellectual disabilities was 10.37 per 1,000 population (Maulik et al., 2011). Among people with intellectual disability globally, 85% of individuals are reported to have mild intellectual disability, 10% have moderate intellectual disability, 4% have severe intellectual disability, and 2% have profound intellectual disability (King et al., 2009). Further, low-income countries report higher prevalence of severe intellectual disabilities (5 per 1,000 children), compared to industrialized nations (Durkin, 2002).

Identifiable etiologies in children with severe intellectual disabilities are as follows (in descending order): chromosomal disorders, genetic syndromes, unknown etiology, developmental brain abnormalities, inborn error of metabolism or neurodegenerative disorders, congenital infections, perinatal causes, and postnatal causes (Batshaw & Shaprio, 2002). Etiology of intellectual disability is only known 25% of the time (Kaneshiro, 2013). The specific syndromes associated with intellectual disability are Fragile X syndrome, Down syndrome, Williams syndrome, and fetal alcohol syndrome (Hogenboom, 2001). Fragile X syndrome is the most common cause of inherited intellectual disability (Hersh & Saul, 2011)

It is important to note how different and varied people with intellectual disabilities and their experiences are. People with mild or moderate intellectual disabilities often lead independent lives, living and working in the community with minimal or no support from the formal service system or their families. People with more severe impairments may need significant support with activities of daily living and supervision to remain safe. The population with intellectual and developmental disabilities is highly heterogeneous.

Societal attitudes toward people with disabilities have a complicated history. There is evidence from antiquity of competing beliefs in both a charitable obligation to people with disabilities and a view that disability was some sort of punishment from God (Braddock & Parish, 2001). Historically in the Western world, societies did not generally differentiate between people with intellectual disabilities and mental illnesses until John Locke famously argued for differential treatment for people with the two conditions in 1690 (Braddock & Parish, 2001).

The term intellectual disability is relatively new and represents an evolving concept. Today, the term intellectual disability is often used interchangeably with the term developmental disability. However, these two terms do not actually mean the same thing. Developmental disability is a broader category of lifelong disabilities that includes intellectual disabilities, physical disabilities, or both (NICHD, 2012).

The terms used to describe what we now call intellectual disability has varied widely through history. During the 19th century and into the first half of the 20th century, the term “feeble-minded” was typically used in social efforts and services on behalf of people with intellectual disabilities and was the accepted clinical term (Braddock & Parish, 2001). However, other terms, including cretin, idiot, moron, and imbecile, were still commonly employed in medical and service contexts (Keith & Keith, 2013). These terms now are highly pejorative and rejected as such by most in the field. The term mental retardation was first used in 1909 to describe students with delayed school progress (Keith & Keith, 2013). Mental retardation was the most common term used until the late 20th century. In recent years, mental retardation has been rejected as pejorative, and it has been replaced by intellectual disability (see the “Campaign Against the R-Word” section for more).

### An Institutional History of Services

#### Eugenics

The eugenics movement had a major impact on the way society thought about and treated people with intellectual disabilities. Sir Francis Galton coined the term “eugenics” in Inquiries into human faculty and its development, outlining the “science of improving stock” (Galton, 2004). People with intellectual disabilities were viewed as a threat to society’s efforts to create a pure race. In 1912, Henry Goddard published The Kalliak Family, a purported genealogy study. Like other such publications in a fairly vast literature, Goddard argued that intellectual disability was hereditary, warning people against the “rising tide of feeble-mindedness” (Goddard, 1912). Goddard’s lineage study of the Kallikaks was subsequently demonstrated to be pseudoscience, with evidence manipulated and falsified to advance the eugenic agenda (Smith & Wehmeyer, 2012).

The successful propaganda of the eugenics era led to widespread sterilization of people with intellectual disabilities, in an organized effort to keep them from procreating. While the exact number of individuals who were sterilized cannot be known, it is estimated that at least 60,000 people labeled feeble-minded or insane were involuntarily sterilized in the United States from 1927 to 1957 (Stubblefield, 2007).

In Nazi Germany, people with disabilities were considered unfit for Hitler’s Aryan utopia. A program called Aktion T-4 was charged with exterminating people with disabilities. The Nazis estimated that 70,273 people with disabilities were killed through Aktion T-4, but postwar prosecutors estimate that over 80,000 adults with disabilities were killed (Mostert, 2002). While euthanasia programs never became widespread in the United States, there is evidence of physicians colluding to kill babies born with visible disabilities throughout first half of the 20th century (Pernick, 1996).

The most prevalent eugenic approach to preventing the procreation of people with intellectual disabilities from society was segregation in institutions (Braddock & Parish, 2001).

#### Institutions

In the United States, the first residential facility for people with intellectual disabilities was established by Samuel Gridley Howe in Massachusetts in 1848 (Braddock & Parish, 2001; Trent, 2012). Howe established a training school for children with intellectual disabilities in his own home.

During the second half of the 19th century, public institutions for children and adults with intellectual disabilities proliferated across the country. By the turn of the century, most states had at least one such facility. As the eugenic movement gained momentum, these institutions evolved from training schools to custodial asylums, excluding and isolating people with intellectual disabilities from their communities rather than providing them with a specialized education.

By 1900, there were nearly 11,800 people with disabilities living in institutions in the United States (Braddock & Parish, 2001). This number continued to swell as the poverty of the Great Depression pushed families toward institutional care (Noll, 1996). These institutions more closely resembled hospitals “for the care of sick animals rather than as a place for the special education of human children and adults” (Switzky et al., 1988, 28). Institutions were commonly overcrowded and understaffed. Facilities were often prison-like, with locked wards that isolated people with disabilities and protected society from their supposed menace. The facilities often relied on the practice of peonage to offset operating costs and meager financial support from states. Peonage was the forced labor of the residents with intellectual and developmental disabilities in facility laundries, farms, dairies, and a range of other productive institutional industries.

Horrifying evidence has emerged of scientific experimentation conducted on institutional inmates. These included, for example, experiments that exposed residents to (untreatable) hepatitis B at the Willowbrook School in New York (Rothman & Rothman, 1984) and radioactive cereal experiments at Massachusetts’ Fernald School. In the latter, guardians were duped into believing their wards were in a “science club” hosted by the Massachusetts Institute of Technology (West, 1998).

Following the Second World War, parents of children with intellectual disabilities began organizing to improve conditions for their children and to secure additional service options instead of institutions. President John Kennedy ushered in a new age of services for people with intellectual disabilities. In 1961, he said, “We as a nation … have for too long postponed an intensive search for solutions to the problems of the mentally retarded” (Kennedy, 1961). Kennedy’s sister, Rosemary, had intellectual disabilities. Kennedy convened the President’s Panel on Mental Retardation, and the panel released “A Proposed Program for National Action to Combat Mental Retardation.” In 1963, Kennedy sent proposed legislation to congress for services for people with intellectual disability outside of institutions (Administration on Community Living, 2013). On the verge of the deinstitutionalization that began in the 1970s, the number of Americans with intellectual disabilities housed in institutions peaked at nearly 195,000 in 1967 (Braddock & Parish, 2001).

The 1970s were a decade of progress in services for people with intellectual disabilities. The ICF/MR law was signed in 1971, spurring deinstitutionalization. ICF stands for intermediate care facility, which is an institution whose primary purpose is to provide health and rehabilitative services to individuals with intellectual disabilities (Centers for Medicare and Medicaid Services, n.d.). Through this legislation, states could receive federal reimbursements for their intermediate care facilities as part of an optional Medicaid service (Centers for Medicare and Medicaid Services, n.d.). The ICF program required minimum staffing levels and minimum square footage for each resident. These federal mandates ultimately catalyzed deinstitutionalization because states complied in order to receive federal funding for their institutional services (Braddock & Parish, 2001).

The ICF/MR law was joined by highly effective parental advocacy to spur the deinstitutionalization movement. Across the country, class action lawsuits filed by parents on behalf of their children in institutions revealed the conditions in which institutionalized people had been living for years. Wyatt v. Stickmey was the first of these, filed in 1970 on behalf of patients with mental disabilities in Alabama. In this case, federal judge Frank Johnson found that patients had a right to humane treatment in institutional facilities. Subsequent watershed lawsuits included the Willowbrook case in New York and Michigan’s Plymouth lawsuit (Braddock & Parish, 2001).

Two prominent court cases in 1972 sought a right for children with disabilities to attend public school. In Pennsylvania Association for Retarded Children (PARC) v. Commonwealth of Pennsylvania, the state agreed that all children have access to a free public education until age 21 (PARC v. Commonwealth, 1972). It also established the standard of appropriateness of instruction, meaning that the education offered to each child must be appropriate to his or her intellectual functioning (Martin et al. 1996). In Mills v. Board of Education (1972), parents of children with disabilities sued the Washington, D.C. school district for refusing to enroll their children or expelling them because of their disability. The U.S. District Court ruled that districts did not have the right to decide whether they had enough resources to serve students with disabilities. Rather, they had an obligation to serve all students. These two lawsuits established the idea of free and public education, which was subsequently codified into federal law when the Education for All Handicapped Children Act (now called IDEA) was passed in 1975 (PL 94-142). This law established the entitlement to education for children with disabilities. Students with intellectual disabilities have since had the right to attend school.

In 1982, the Medicaid home and community-based services waiver was created under section 1915(c) of the Social Security Act. These Medicaid waivers allow states to apply for federal funds for long-term care in the community. States use the waivers to provide services for people who require institutional-level care (Shirk, 2006). Waivers are used for different constituencies, including the elderly, people with intellectual disabilities, and people with HIV/AIDS. Today, home and community-based services waivers are the primary funders of community services for people with intellectual disabilities.

Today, the federal definition of intellectual disability is codified in the Developmental Disabilities Act amendments adopted in 2000. It is as follows:

(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:

(I)

Self-care.

(II)

Receptive and expressive language.

(III)

Learning.

(IV)

Mobility.

(V)

Self-direction.

(VI)

Capacity for independent living.

(VII)

Economic self-sufficiency; and

(v)

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.

### Centrality of the Family

The importance of family for people with intellectual disabilities cannot be overstated. Most Americans with intellectual disabilities live at home with family caregivers. Currently, 80% of the approximately 2.65 million children and adults with IDD (aged >5) in the United States live at home with family caregivers, including parents, siblings, and other extended family members (Burke & Fujiura, 2013). An estimated 613,000 people with IDD in the United States receive residential services (Braddock et al., 2013), and another 73,000 Americans on the waiting list for residential services (Research and Training Center, 2013). Many people with disabilities live with aging caregivers. In 2008, 19% of US households that included a person with an intellectual or developmental disability were headed by someone 65 years old or older (Parish, Rose, & Swaine, 2010). In recognition of the connection between disability and aging, the federal government changed to combine disability and aging federal entities together into the Administration on Community Living in 2013 (Administration on Community Living, 2014).

Caring for a loved one with intellectual disability is not easy. Caregiving often requires specialized knowledge to navigate multiple formal systems of care and service: early intervention, education, pediatric health, adult health, long-term care, vocational, case management. Caregiving can be physically demanding, requiring caregivers to provide transfers and physical assistance with activities of daily living. Further, caregiving is expensive—insurance often fails to pay for the elevated care needs of people with intellectual disability. Caregiving is often chronically stressful and takes a heavy emotional toll, and emerging evidence suggests caregiving takes a physical toll. Family caregivers consistently report worse health outcomes than those who are not caring for an individual with a disability (Burke & Fujiura, 2013).

Family caregivers of people with intellectual disabilities also experience poverty and limited assets across the life course. Rates of asset poverty as well as limited assets are high across the life span of parents of children with intellectual disabilities (Parish, Swaine, & Rose, 2010). This means that in the event of a familial financial crisis, parents of children and adults with disabilities have few assets to buffer them from hardship. Poverty rates are high for these families at all ages, and elevated rates of poverty do not subside for parents of children with intellectual and developmental disabilities when their children grow up. In contrast to the typical parent–child caregiving relationship, wherein the child grows up, leaves home, and no longer needs parental caregiving or support, many people with intellectual disability depend on their parents for care throughout their lives. Households with an adult with disabilities have substantially reduced net worth and income when compared to households without an adult with disabilities (Parish et al., 2010).

At the end of the last century, it was predicted that increasing life expectancy for people with intellectual disability, coupled with a lack of residential services and aging caregivers, would spell a crisis for people with intellectual disabilities (Braddock, 1999). Perhaps this prediction is realized in the small amount of funding allocated to family support services today. Despite the fact that about 80% of Americans with intellectual disability live with family caregivers, spending on family support consumes only 7% of the $56.7 billion developmental disabilities system expenditures (Braddock et al., 2013). The vast majority of funding goes instead to out-of-home residential placement, vocational services, and ancillary supports. The need for increased resources will continue to be a concern as the Baby Boom generation ages and there is more demand and greater competition for limited social resources (Parish, Pomeranz-Essley, & Braddock, 2003). ### Services and Supports Available to People with Intellectual Disabilities Today, a range of different services are available to support people with intellectual disabilities throughout the life span. Support is available to young children through early intervention. Early intervention services for infants and toddlers have been part of IDEA since 1986. Early intervention is a$436 million federal Department of Education program administered by the states that serves children through age 2 who have either developmental delays or diagnosed physical or mental conditions with high probabilities of resulting in developmental delays (US Department of Education, 2014). Early intervention helps infants and toddlers to develop their physical, cognitive, communication, social/emotional, and adaptive behaviors at a young age to maximize their potential as they reach school age (Küpper, 2012).

Once children enter school, they are entitled to special education services because of the federal special education mandate, the Individuals with Disabilities Education Act (IDEA). Upon entering the school system, the child is evaluated and, if eligible for Special Education services, gets an individualized education program, commonly called an IEP. The IEP is written for a student with input from regular and special education teachers, parents, and other school officials. It outlines the student’s current academic performance, annual goals, and how the goals will be measured, accommodations, special education services, transition services, and participation in standardized testing (National Center for Learning Disabilities, 2014). The IEP entitles the student to necessary services until he or she graduates from high school. Once a student graduates from high school or “ages out” of the school system at age 21, he or she is no longer entitled to the services outlined in the IEP. Some people in the disability community refer to the transition between school and adult life as “falling off the cliff” (PBS, 2013).

Medicaid provides health insurance for low-income people with disabilities. In most states, people who receive Supplemental Security Income (SSI) are automatically eligible for Medicaid (SSA, 2014c). In addition to qualifying for Medicaid through their SSI enrollment, adults with disabilities can also qualify if they are considered “medically needy.” This means that individuals whose income is too high for them to qualify for Medicaid but who have high medical costs qualify for the program by deducting the cost of their medical expenses from their income (Crowley & Elias, 2003). Medicaid is particularly important for people with intellectual disabilities because private insurance is often employer-based, and many people with intellectual disabilities are unable to work full time and thus do not receive private insurance (Musumeci, 2014). Of the 25 million Americans with disabilities, 20% receive health insurance through Medicaid (Crowley & Elias, 2003).

The Social Security Administration administers two income transfer programs specifically for people with disabilities: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSDI became law in 1956 and aims to provide support to workers who become disabled and their families (Berkowitz, 2000). SSDI defines disability as a condition that lasts over one year or will result in death (SSA, 2014a). SSDI is for individuals who have accumulated enough work credits and does not make payments to people who have not worked. SSI, on the other hand, is a welfare program that provides monthly income to individuals with disabilities, including children, who have little or no income. Signed into law in 1972, SSI helps elderly people and people with disabilities by providing cash assistance for basic needs (SSA, 2014b). While these benefits are important to people with intellectual disabilities, they are not generous. For example, in 2013, the maximum monthly SSI benefit was \$710, 56% below the federal poverty level for a family of three (Parish, 2013).

The states also provide housing assistance to individuals with intellectual disabilities, and services vary considerably from state to state. An estimated 73,000 Americans with intellectual disabilities were on waiting lists for residential services across the country in 2013 (Research and Training Center, 2013). These individuals are most often living at home with family caregivers. Some states offer support to families who are caring for a loved one with a disability at home, which can ease demand for residential services. For example, Massachusetts offers the Adult Foster Care/Adult Family Care program, which provides a tax-free stipend to caregivers who maintain a person with a disability in their home (Massachusetts Department of Health and Human Services, 2014).

Another service that helps keep individuals with intellectual disabilities in their communities is the Medicaid Home and Community Based Services (HCBS) Waiver. This is an optional program that all states participate in through Medicaid. They receive funding for serving people with intellectual disabilities in noninstitutional settings. HCBS waiver funding is used for things like day habilitation, home health aides, transportation, respite, nursing, and more (Iowa Department of Human Services, 2013). HCBS waiver services are essential for providing the wide range of services that people with intellectual disabilities need to thrive in the community, and this funding is the largest funder of services of all types in the intellectual disabilities service system (Braddock et al., 2013).

### Current Issues: Healthcare

Poverty predicts poorer healthcare and health outcomes (Institute of Medicine, 1998, 2002). Given the high rates of poverty among people with intellectual disabilities, it is not surprising that they have worse health than their nondisabled peers. Chronic health problems often go unrecognized in people with intellectual disabilities. This happens frequently with vision and hearing, as well as chronic health conditions like hypertension and diabetes (Krahn, 2006).

Where people live also affects the quality of healthcare they receive. A 2002 study found that people living in group homes were more likely to have a healthy body mass index and to have a personal dentist or physician than people living in the community with family, with friends, or alone (Lewis et al., 2002). Women living in group residences were also more knowledgeable about women’s health and preventive screenings than women living with a family caregiver (Parish et al., 2012).

Disparities are heightened for women with intellectual disabilities. Compared to nondisabled women on Medicaid, women with disabilities have worse rates of receiving needed medical care or prescription medications, as well as being less satisfied with their care (Parish & Ellison-Martin, 2007). Women with intellectual and developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines (Parish et al., 2012).

Racial and ethnic disparities also persist in terms of healthcare access for people with intellectual disabilities. For example, black and Latino children with autism and other intellectual and developmental disabilities fared worse than their white counterparts across five of six healthcare quality measures on the 2005–06 National Survey of Children with Special Health Care Needs (Magaña et al., 2012). Racial disparities in healthcare continue into adulthood. A 2013 study found that white women with intellectual disabilities received mammograms at rates nearly three to five times higher than African American women (Parish et al., 2013). People of color with disabilities face significant challenges to receiving healthcare based on both their disability status and their racial/ethnic background.

### Current Issues: Poverty

There is a bi-directional relationship between disability and poverty. Poverty can cause disability, because people living in poverty are more likely to be associated with psychosocial and biological hazards associated with disability (Emerson, 2007). On the other hand, the elevated costs of caring for a child or adult with disabilities can lead people with disabilities and their families into poverty. Children with disabilities are more likely to grow up in poverty (Emerson & Hatton, 2009), and having a child with a disability is a significant determinant of material hardship in the child’s family (Parish et al., 2008; Emerson & Hatton, 2009). Supporting a child with an intellectual disability is extremely expensive. The direct costs of caring for children with intellectual disability include therapies, rehabilitation, equipment, home modifications, transportation, as well as preventive and emergency services. These services are not necessarily covered by even the best insurance, meaning that parents have to pay out of pocket to provide them for their child. A 2005 study found that in the United States, parents of children with disabilities spent two times more than parents of kids without disabilities on out-of-pocket healthcare expenditures (Newacheck & Kim, 2005).

In addition to the direct costs of raising a child with a disability, there are also the indirect costs. Caring for a child with a disability takes a lot of time and energy. Parents may need to work fewer hours or stop working in order to care for their child. To demonstrate, mothers of children with disabilities were less likely than mothers of nondisabled children to have job spells lasting five years or more, and they also had lower earnings at age 36 (Parish, Mailick, Greenberg, & Floyd, 2004). The heightened direct and indirect costs of raising a child with a disability contribute to the association between disability and poverty.

People with less severe disabilities and their families are more likely to experience poverty (Emerson & Parish, 2010). While this may seem surprising or counterintuitive, people with less severe disabilities may not quality for the services and supports available to people with severe disabilities. At the same time, these individuals may not have the same work and earning potential as their nondisabled peers, and their family members still need to invest significant time and energy into their care (sometimes at the expense of work).

Family advocacy has been essential in ensuring the rights of people with disabilities. This advocacy traces its roots to the formation of the first community services, led and organized by parents, in the 1940s and 1950s (Braddock & Parish, 2001). These parents organized to provide educational, vocational, and recreational opportunities for their children with intellectual and developmental disabilities. People with intellectual disabilities have been a marginalized group in society, and thus families have historically been the voice for the needs of their loved ones with disabilities.

The Arc is the largest parent-based advocacy organization in the intellectual and developmental disabilities field. Originally called the National Association for Retarded Children, The Arc was comprised of parents across the country that came together and decided that they wanted something other than institutional life for their children. The parents organized to increase community services and improve conditions in state institutions.

Family Voices is another important family advocacy organization in the intellectual disability field. Founded in 1982, Family Voices is a grassroots national network that encourages family-centered care for children with disabilities. Family Voices is a sort of support group for parents of children with disabilities to learn to be advocates for their own family and to support other families.

Parental advocacy was behind the most important advancements for people with intellectual disabilities in the 20th century. Several class-action lawsuits brought by parents whose children were denied public school educations spurred the IDEA (Barnatt, Schriner & Scotch, 2001) and deinstitutionalization (Braddock & Parish, 2001). Today, family advocacy from groups like The Arc and Family Voices are essential in the passage of any disability policy.

Substantial improvements were made in services for people with intellectual disabilities in the second half of the 20th century. However, most of the advocacy for these changes was done on behalf of people with disabilities, rather than incorporating their input and opinions (Barnatt, Schriner, & Scotch, 2001; Braddock & Parish, 2001). The ideology of self-advocacy has developed in recent years, encouraging people with disabilities to speak up for themselves rather than having caregivers speak for them. There are well-known examples of self-advocacy in the larger disability rights movement, such as the federal protests to implement the Vocational Rehabilitation Act of 1973, the Capitol Crawl to support passage of the ADA in 1990, or the Deaf President Now protests at Gallaudet University (Braddock & Parish, 2001).

Self-advocacy has influenced recent policies for services for people with intellectual disability. For example, consumer-directed services are a growing option for people with intellectual disability. This Medicaid program:

presents individuals with the option to control and direct Medicaid funds identified in an individual budget, and in which the participants live in their own homes … Essential elements of self-direction include: (a) person-centered planning, (b) individual budgeting, (c) self-directed support, and (d) quality assurance and improvement. (HHS, 2003)

Consumer-directed services mark a major shift in intellectual disability services. Instead of prescribing a bill of services for a person with an intellectual disability, it supports them to make their own choices about what services they need. Under consumer-directed services, the person with the disability is at the center of his or her services rather than a service agency at the center, determining what is best for the person.

Consumer direction is a growing trend in Medicaid services (Greene, 2007), and we are likely to see more states incorporating consumer-directed services in the future.

### Campaign against the “R”-Word

Recently, due to significant concerns of advocates, professionals, and parents, the word “retarded” has fallen out of favor because of its highly pejorative, demeaning usage in pop culture. This term has been replaced by the term intellectual disability. Historically, terminology has changed frequently in the field. Often this has been because a word that was once neutral and descriptive acquires negative or pejorative connotations. “Retard” or “retarded” were once considered to be objective descriptions, describing the nature of an individual’s impairment. However, the “r-word” is no longer a descriptor, but rather a slur (Downes, 2013). People today most often use “retard” as an insult.

A campaign took shape to discourage people from using the “r-word.” This campaign has been led by self-advocates with intellectual disabilities, including SABE (Self-Advocates Becoming Empowered, the largest intellectual disabilities self-advocacy organization in the United States) and Special Olympics International. Many other disability organizations have joined the effort to spearhead a campaign called “Spread the Word to End the Word.” This campaign encourages students to talk to each other about why words can be hurtful and the importance of using respectful language to characterize people with intellectual disabilities. In 2010, President Obama signed Rosa’s Law, changing references to “mental retardation” in federal law to “intellectual disability.” Rosa’s Law also changes references to a “mentally retarded individual” to an “individual with an intellectual disability” (S. 2781, 2010). Rosa’s Law highlights both a change in terminology and a change in the description of people with disabilities. The law incorporates so-called people-first language, a way of speaking and writing about people with disabilities that puts the person before their disability (e.g., describing someone as a person with an intellectually disability rather than an intellectually disabled person).

Rosa’s Law inspired further changes in terminology. In 2013, the Social Security Administration voluntarily replaced “mental retardation” with “intellectual disability” in its list of impairments. States were not mandated to change their terminology under Rosa’s Law, but many have followed the federal precedent.

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