The Basics

As I mentioned in my last blog entry, the health care reform bill signed by President Obama includes something called Community Living Assistance Services and Supports (CLASS).  CLASS is a voluntary, self-funded insurance program for long-term care services.  People who are working will be able to pay into a fund that will provide ongoing cash benefits should they lose their ability to perform multiple activities of daily living.  A person who receives these benefits gets to decide which nonmedical services and supports he or she needs to maintain independence at home or in another residential setting.

Why do we need CLASS?

We’re not getting any younger.  Long-term supports and services are expensive and most of us don’t have insurance to cover them.  Medicare and most private insurance only pay for a short period of long-term care.  Those who need long-term care often must spend all of their assets until they are eligible for Medicaid (that is, until they are officially poor). 

Today, about five million Americans under age 65 who live in the community have long-term care needs.  More than 70,000 workers with severe disabilities need daily assistance to maintain their jobs.  About 65 percent of people over 65 will need some amount of long-term care services in their homes.  There are now one-and-a-half million Americans in nursing homes, and about nine million seniors who need assistance with activities of daily living.  These numbers are all on the rise.

How does CLASS work?

Anyone who is working can choose to enroll or opt out.  Those who participate pay a monthly premium.  You must pay premiums for five years and work for three years in order to qualify for benefits.  If you come to need help with activities of daily living you will be assessed and, if eligible, begin receiving benefits.  The amount of the benefits depends on your level of need.  CLASS anticipates that the average case benefit will be about $75 per day.  Counseling, coordination and advocacy services to assure receipt of high-quality support services will also be available.

Does CLASS respect disability rights?

Absolutely. CLASS is designed to support choice and independence. Participation is voluntary. Benefits may be used as the person sees fit to support and maintain community living (home modifications, assistive technology, accessible transportation, homemaker services, respite care, personal assistance services, home care aides, nursing support, etc). They may even be used to help a person with disabilities stay on the job. For those with greater needs, benefits can also be used to offset the costs of assisted living and nursing home care.

How can the government afford this program?

All CLASS benefits and administrative costs come from premiums, not taxpayer money. To assure this, the law requires that premiums be set at a level that actuaries certify as self-sustaining. In addition, CLASS will save public money by reducing Medicaid costs. Allowing people to hire their own help and make their own choices lowers the need for expensive, publicly-funded nursing home beds.

So? (And what about that Keep Rockin' reference in the title?)

As a member of the Baby Boom generation, Biden's language does not shock me.  Nor (as is likely true of many Boomers) have I fully embraced fact that old age approacheth.  I've never bought long-term care insurance because it's expensive, it has terms and limitations that are hard to evaluate, and -- to be honest -- I simply don't like thinking about it. 

But now, like Joe Biden, I am excited.  With a touch of this CLASS, my fellow Boomers and I could have the chance to keep on "rockin' in the free world."

We are deeply saddened to hear of the death of Senator Edward M. Kennedy.

The importance of Senator Kennedy to the disability rights movement cannot be overstated.  He has been our champion for decades.  It will take volumes of scholarship to fully document his importance to our community and the nation as a whole, but let me give you a highly abbreviated taste of what he accomplished for us over the past 40 years.

1975:  Cosponsored the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA). The law served to amend the Education of the Handicapped Act and to guarantee a free and appropriate public education to children with disabilities.

1975:  Cosponsored legislation to create a “bill of rights” for people with developmental disabilities, providing funding for services for people with this type of disability, supplementing funding for affiliated university facilities and creating state-based systems of protection and advocacy groups in all 50 states.

1978:  Cosponsored the Civil Rights Commission Act Amendments of 1978, which expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability.

1978:  Strongly supported the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978 establishing a functional definition of developmental disability, creating the National Council on the Handicapped and the National Institute of Handicapped Research, setting a funding minimum for protection and advocacy services and authorizing a grant for independent living services.

1980:  Cosponsored the Civil Rights for Institutionalized Persons Act, which enforced the rights of people in government institutions such as the elderly, the disabled, the mental ill, and the incarcerated under the Constitution.

1982:  Cosponsored the Job Training Partnership Act, designed to break down barriers facing “economically disadvantaged” individuals including people with disabilities and assuring that people could not be excluded from the training program based on a disability.

1982:  Cosponsored legislation allowing states to cover home health care services for particular children with disabilities under their Medicaid plans. This was intended to allow parents “respite” or rest periods with a trained professional helping to care for their child’s needs.

1984:  Cosponsored legislation requiring polling stations to provide physical accessibility and registration and voting aids for people with disabilities.

1986:  Cosponsored the Air Carrier Access Act requiring facilities and services to be accessible to people with disabilities traveling by air.

1986: Cosponsored the Employment Opportunities for Disabled Americans Act, which made work incentives for disabled individuals a permanent fixture of the Social Security Act.

1986: Cosponsored the Handicapped Children's Protection Act of 1986, which overturned a Supreme Court decision and allowed courts to award sensible attorneys fees to parents of children with disabilities winning in due process proceedings and other court actions under part B of the Education Act.

1986:  Cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families and promoting preschool programs for children ages 3 to 5 with disabilities.

1988:  Introduced the Fair Housing Act Amendments to extend the Fair Housing Act of 1968 to include people with disabilities and families with children.

1990: Cosponsored a bill that changed the name of the Education of the Handicapped Act to IDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury. It also reauthorized the programs under the previous act to provide improved support to students with disabilities particularly in the terms of computer access and assistive technology.

1990:  Introduced (with Senator Harkin) the Americans with Disabilities Act prohibiting discrimination against individuals with disabilities.

1990: Introduced the Ryan White CARE Act which provided emergency relief to thirteen cities hardest hit by the AIDS epidemic, and also provided substantial assistance to all states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care.

1991:  Sponsored legislation to reorganize the Alcohol, Drug Abuse, and Mental Health Administration.

1997:  Cosponsored amendments to IDEA directing inclusion of special education in state and district-wide assessments, promoting mediation as an option to disputes between teachers and parents of children with disabilities, providing that special education students be disciplined in the same way as other students, continuing services to adult inmates with disabilities who were eligible for IDEA prior to their incarceration, and requiring charter schools to meet the needs of children with disabilities and to receive IDEA funds from district schools.

1998: Cosponsored the Crime Victims and Disabilities Awareness Act of 1998 directing the Attorney General to conduct a study of crimes against people with disabilities.

1999:  Cosponsored the Ticket to Work and Work Incentives Improvement Act. The law and its “ticket to work and self-sufficiency” program expanded employment opportunities for people with disabilities through providing disabled Social Security beneficiaries greater support and more options. It also allowed for working people with disabilities to receive benefits from Medicaid and/or Medicare.

2004:  Cosponsored the Assistive Technology Act which supports states in to sustain and strengthen the capacity to meet the assistive technology needs of individuals.

2004: Sponsored the reauthorization of the IDEA, with a new focus on promoting better alignment of special education with general education and having school districts be accountable for the educational outcome of all students, including students with all ranges of disabilities.

2006:  Won a 5-year-long battle to pass the Family Opportunity Act. The law provides states the option of allowing families of disabled children to purchase health coverage through Medicaid. The bill passed as an amendment to the budget reconciliation bill.

2008:  Championed mental health parity legislation assuring individuals living with mental health and substance abuse issues that their mental health benefit would be treated equally with the medical-surgical benefit regarding treatment limitations and financial requirements.

2009: Succeeded in having the CLASS Act included in the text of the Affordable Health Choices Act that was passed out of the HELP Committee. This bill aims to provide elderly and disabled individuals with a daily cash benefit to purchase services and supports they need to remain in and be a productive member of the community.

 These accomplishments amount to a virtual history of the disability rights movement.  For this and so much more, we salute and thank Senator Kennedy.

Greetings from Washington, DC!  I’m here to attend a conference and to visit some legislators. 

 It just so happens that today, the House Committee on Education and Labor held a hearing to examine abusive and deadly uses of seclusion and restraint in U.S. schools. Seclusion and restraint are physical interventions used by teachers and other school staff to prevent students from hurting themselves or others.  Here is some background.

 The General Accounting Office (GAO) recently testified before the Committee about allegations of death and abuse at residential programs for troubled teens.  About that same time, Oregon state officials initiated an investigation of such a program: Mount Bachelor Academy.  The results of that investigation are pending.

 DRO’s national organization, the National Disability Rights Network (NDRN) released a major report in January that exposed deaths and serious injuries resulting from the use of seclusion and restrain in schools.  It documented cases where students were pinned to the floor for hours at a time, handcuffed, locked in closets, and subjected to other acts of violence. In some of these cases, this type of abuse resulted in death.

 In response, the Committee asked GAO to (1) provide an overview of seclusions and restraint laws applicable to children in public and private schools, (2) verify whether allegations of student death and abuse from the use of these methods are widespread, and (3) examine the facts and circumstances surrounding cases where a student died or suffered abuse as a result of being secluded or restrained.

 In its testimony today, GAO found no federal laws restricting the use of seclusion and restraints in public and private schools and widely divergent laws at the state level. It found hundreds of cases of alleged abuse and death related to the use of these methods on school children during the past two decades. Examples of these cases include a 7 year old dying after being held face down for hours by school staff, 5 year olds being tied to chairs with bungee cords and duct tape by their teacher and suffering broken arms and bloody noses, and a 13 year old hanging himself in a seclusion room after prolonged confinement.

 Although GAO continues to receive new allegations from parents and advocacy groups, it could not find a single Web site, federal agency, or other entity that collects information on the use of these methods or the extent of their abuse.

 GAO also examined the details of 10 restraint and seclusion cases in which there was a criminal conviction, a finding of civil or administrative liability, or a large financial settlement. The cases share the following common themes: they involved children with disabilities who were restrained and secluded, often in cases where they were not physically aggressive and their parents did not give consent; restraints that block air to the lungs can be deadly; teachers and staff in the cases were often not trained on the use of seclusions and restraints; and teachers and staff from at least 5 of the 10 cases continue to be employed as educators.

 The Committee heard from five witnesses who told tragic stories of death or injury related to restraint in school.  Committee Chair George Miller responded, noting that “approaches such as School Wide Positive Behavior Support can help establish a social culture and positive environment that uses data-driven decision-making to foster appropriate behavior and improve academic achievement.”

He concluded: "Congress must step in and fill the void that has resulted in scars that may never heal for these children and their families who have been victims of this abuse. I hope the next step will be to enact a federal policy to ensure the tragic stories we will hear today will never occur again."

 For more:  http://edlabor.house.gov/hearings/2009/05/examining-the-abusive-and-dead.shtml

The national network of Protection and Advocacy (P&A) organizations (like DRO) is represented in Washington DC by the National Disability Rights Network (NDRN).  Recently, NDRN urged legislators, on our behalf, to support hate crime prevention legislation.  The proposed bill would grant agencies the authority to investigate and prosecute federal crimes based on the victim’s disability, whether real or perceived, and would authorize funding to states to help with the prosecution of hate crimes.

In a letter signed by almost all P&As, we reminded legislators that through much of our country’s history, people with disabilities -- including those with developmental delays, epilepsy, cerebral palsy and other physical and mental impairments -- were seen as useless and dependent, hidden and excluded from society, either in their own homes or in institutions.  Now, this history of isolation is gradually giving way to inclusion in all aspects of society, and people with disabilities everywhere are living and working in communities alongside family and friends.

But this has not been a painless process.  People with disabilities often seem “different” to people without disabilities.  They may look different or talk differently.  They may require the assistance of a wheelchair, a cane, or other assistive technologies.  They may have seizures or have difficulty understanding seemingly simple directions.

Unfortunately, disability bias can manifest itself in the form of violence.  Federal hate crimes legislation would broaden the definition of hate crimes to include disability, sexual orientation, gender and gender identity.  It would make grants available to states and local communities to combat violent crimes committed by juveniles, train law enforcement officers, or assist in state and local investigations and prosecutions of bias-motivated crimes.

 Violence against individuals with disabilities is not limited to adults.  On Monday, March 9, the Oregon House Education Committee will hold a hearing on House Bill 2599.  This bill would strengthen Oregon law that is designed to lessen the bullying of students in our schools.  It would make school districts adopt policies to train staff and students about avoiding and reporting bullying and designate a staff person to accept complaints of bullying.  DRO supports this bill that will provide a reasonable way to address the harassment of all students, including students with disabilities.