It is a human right to have adequate housing. We need it not only for shelter from the elements, but also for a space to live and develop, and a place to create and take care of families, friendships and community. Living in a home of one’s own is the foundation of independence. With stable housing people can achieve other life goals such as education and employment. Housing for people with disabilities is a major concern. Many have little chance of finding safe, affordable housing. Those who rely on SSI cannot afford housing without government assistance.
Government legislation and major disability groups push for community integration for all people with disabilities. Just like employment, however, community integration is not necessarily the right move for everyone. They should have a choice about where they live, just as everyone else does.
There are five types of housing options available for individuals with developmental disabilities.
Apartments/Houses: Living in a house or an apartment, whether with their parents or a roommate, is one option for people with disabilities. Renting a house or an apartment is expensive; however, government assistance is available.
Supported Living: This type of housing is usually an apartment building with several units and all of the tenants are individuals with developmental disabilities. This type of living promotes independence by providing services in case management and home living skills. Staff members are scheduled on a rotating basis to offer assistance and support in areas such as cooking, cleaning, grocery shopping, and personal hygiene, as needed. Depending on the personal needs of the individual, some staff members also teach life skills such as money management.
Group Homes: In a group home setting, residents generally have their own bedroom, but share the common areas, such as the bathrooms, kitchen, and living room, with other residents. The residents in this type of home are each responsible for various household chores, such as washing dishes, doing laundry, and setting the table. For some residents, sharing household duties makes it easier for them to live in a home-type environment. There is 24-hour support and a full-time caregiver who lives in the home providing meals, on-site care, and supervision, as required.
Nursing Homes: Nursing homes are similar to group homes in that there is a caregiver on-site at all times; however, a nursing home also has nurses on staff. Most nursing homes provide rehabilitation services, including physical, occupational, and speech therapies. They typically house a large number of people and the residents share common areas such as the visiting and dining areas. Depending on available space and the personal needs of the person, some residents have private bedrooms and bathrooms, while others may share with another resident.
Habilitation Centers/Institutions: This type of housing is a 24-hour residential care facility which includes medical, behavioral, and habilitative training. There are doctors, nurses, and therapists on staff to provide the residents with necessary care. The primary mission of a habilitation center is to provide residential support and treatment service. In addition, residents are also offered a variety of programs, such as employment opportunities, and occasional outings in the community. Habilitation centers mainly serve individuals who have severe disabilities, behavioral issues, are court committed, or medically fragile.
There are many obstacles in providing safe, accessible housing to people with developmental disabilities. One barrier in the housing system is that it is difficult to find useful and reliable information. Not only are the forms and policies complex, but funding agencies rarely have information about other options outside of their administrative circle.
One of the biggest obstacles is simply that there is not enough accessible housing available. Those who request and qualify for housing services are placed on a waiting list. Those who are eligible to receive housing are selected by their need, not the order they were put on the list. To ensure fairness among everyone on the waiting lists, the utilization review (UR) process was established to identify each person’s need based on their health, safety, and quality of life. As of October, Missouri’s Residential Wait List currently has 239 individuals waiting for placement.
When new housing units are built specifically for housing people with disabilities, the units are often rented and a waiting list compiled before construction is completed. The demand for housing far exceeds the available supply.
When there is nowhere else to go, some people become emergency wards of the state. For example, one man, who had schizoaffective disorder, and was taken care of by his mother his entire life, walked into the emergency room after his mother died because he did not know where else to go. He ended up spending 26 months in the hospital because no other appropriate home was available at the time.
Another major obstacle in providing housing to people with developmental disabilities is money. A person with a disability who relies on SSI or family support will have difficulty in finding affordable housing. People with disabilities need more subsidy funding and down-payment assistance than low-income working families. According to an AARP study, the total cost of care for one person in a nursing facility is $75,190 a year, with 64 percent of these costs paid with public dollars. The cost of supporting that same person in his own home in the community is $18,000 a year.
Depending on the community and type of housing, community living is potentially expensive. According to a study entitled “Priced Out in 2010” by TAC and the Consortium for Citizens with Disabilities, people with disabilities living on SSI would have to pay 112 percent of their SSI income to rent a modest one-bedroom unit; smaller units, such as a studio or efficiency apartment, would cost 99 percent of SSI. According to the study, more than 4.4 million non-elderly adults in the U.S. received SSI payments in 2010. The study further indicates that 1.2 million non-elderly people with disabilities live in homeless shelters, public institutions, nursing homes, overcrowded boarding homes, or segregated group quarters. In addition, an estimated 700,000 adults with disabilities are living at home with parents who are 65 and older.
One solution to the financial problem is the Money Follows the Person program. The MFP program helps people who are aging or who have disabilities, move from institutional settings, such as habilitation centers or nursing facilities, to community-based settings. The goal is to strengthen the ability of Medicaid programs to provide home and community-based services to people who choose to transition out of institutions. The Affordable Care Act of 2012 strengthened and expanded the program by granting $2.25 billion—or $450 million for each fiscal year 2012-2016. Over 12,000 individuals have benefited from this program and transitioned from institutions to the community. Missouri is one of the 43 participating states in the program.
The U.S. Department of Housing and Urban Development (HUD) has programs in place to help subsidize housing such as Section 811, housing vouchers, and public housing.
Section 811 - Supportive Housing for Persons with Disabilities: This program provides funding to nonprofit organizations who want to develop housing for low-income people who have significant disabilities. It also provides rent subsidies, wherein residents are only required to pay 30 percent of their adjusted income for housing, which makes it affordable for people who depend on SSI income. According to The ARC, only about 30,000 units exist under this program nationwide, due to limited funding.
Section 8—Housing Choice Vouchers: This program helps subsidize rental housing in the private market for very low-income families, the elderly, and people with disabilities. Participants are responsible for finding their own housing, which must meet the terms of the program. Most areas of the country have long waiting lists for these types of vouchers, and the application process can be challenging for people with disabilities.
Public Housing: Public housing agencies own and operate housing developments which are federally funded. HUD public housing comes in all types and sizes, from single family homes to high-rise apartments. Residents are required to pay 30 percent of their income for rent, which makes it affordable for low-income individuals or families. Again, availability is limited and waiting lists exist for this type of housing as well.
A growing trend among many legislators and disability advocacy groups is to move all people with disabilities into integrated community living. It started out as a way to transition residents in long-term care facilities, such as institutions and nursing homes, into homes or apartments within the community. It has developed into a full-scale movement to transition all people with disabilities, who live in housing dedicated to a disability, into housing within the community. They claim that people with disabilities who live with other people who have disabilities, as opposed to living with non-disabled people, is harmful and unnecessary.
Many opponents disagree and believe that institutions and segregated housing are necessary for some individuals with developmental disabilities. Not everyone wants to live in the community, nor is it financially or logistically possible. Some require 24-hour care and support that is only available in a long-term care facility; others, while physically capable of living on their own, may prefer the safety and comfort of living with people who are like them. What works for some people does not work for everyone.
To further complicate matters, whenever housing issues for people with disabilities are discussed in legislation or in the media, both physical and intellectual disabilities are lumped into the same category. The housing accommodations that a person in a wheelchair requires, is entirely different from the accommodations a person who has an intellectual disability requires. Someone who is diagnosed with an intellectual disability has an IQ below 70, with limits in mental functioning, communication, and certain life skills. How much support a person requires depends on the severity of the disability.
Some people with disabilities are both capable and have a desire to live in the community in a home of their own. They enjoy living near community conveniences such as transportation, shopping, and recreation. It also provides them an opportunity to interact with people who do not have disabilities, which adds to normalization.
Socialization — Proponents of integration claim that living in the community encourages socialization and strengthens relationships with people they would not otherwise have had a chance to meet. It can improve social skills, which is helpful in learning how to participate as a productive member of a community. It is also helpful to community members as they learn acceptance and how to interact with people who have disabilities.
While this interaction is a positive experience for some individuals, others experience isolation. They shut themselves off from their neighbors because they feel like they don’t belong, they don’t understand certain social cues, or are victims of bullying. Living with other people who have disabilities helps them to feel safe and accepted, which results in long lasting friendships with their neighbors.
Independence — Living in the community can provide a certain level of independence and privacy. People with disabilities who live in the community have the opportunity to explore on their own, set their own schedules, or to find employment. They make decisions about their daily lives and live as they choose.
While independence is a worthwhile goal, the reality is that without someone to establish a schedule or encourage activity, an individual with an intellectual disability may choose complacency instead. Some would watch TV all day, binge on junk food, and neglect personal hygiene, if given the opportunity. Sometimes having too many options can also cause a person to shut down because they are overwhelmed. A perk of living with other people who have disabilities is that there are ample opportunities to socialize with their peers, participate in activities, and there is comfort in having an established schedule on which they can rely.
Support — People with developmental disabilities who have direct care staff are eligible to have staff no matter where they live. Some people may require 24-hour care and medical assistance, which will requires a different housing arrangement than someone who needs part-time assistance.
Living alone provides a certain level of privacy, but it can also subject people to potential safety issues. The welfare of individuals with disabilities is always a concern. When they are living on their own with limited supervision, they are more at risk for abuse - physically, financially, or emotionally – either by strangers, people with whom they are familiar, or even their own families. There is a checks and balance system in place for people who live in a segregated setting. Not only do the residents look out for one another, but there are direct care staff members on-site who monitor guests and can shelter residents from harm. Staff members are also available in emergency situations.
Technology — Those individuals who need 24-hour a day supervision can have more independence with companies that offer two-way communication systems through web-based programs. A system, developed by the company, Rest Assured, was designed to help individuals with disabilities gain more independence while staying safe. The system includes the use of electronic sensors, speakers and microphones, tele-cams in common areas, smoke detectors, temperature detectors, and personal emergency response systems. The individual is linked to a remote staff caregiver who can provide support face-to-face via the Web. If in-person help is required, an on-call staff person is available to assist the individual.
Technology can potentially result in isolation. Depending on a computer program instead of human interaction is a method of segregation. Technology is expensive and depending on the type of disability, can cost more money than other living situations. Many of the technological advances are demonstrated in helping those with physical disabilities, with very little demonstrated to help those with intellectual disabilities.
Transportation — Living in the community allows access to a variety of services such as medical and dental care, and opportunities for recreation, eating out, and shopping. Depending on the size of the community, public transportation can aid people with disabilities in achieving an independent lifestyle.
Transportation is a huge issue for many people with disabilities because many do not drive or have cars of their own. Rural areas often do not have public transportation, which means they must find another way of getting to and from the doctor, their jobs, and other places. When people with disabilities live with other people with disabilities, there are usually transportation opportunities available.
In addition, there are safety issues involved when transportation is insufficient. Without transportation, a person with an intellectual disability can potentially wander the streets, request rides from strangers, or involve themselves in other life-threatening situations.
The ADA prohibits discrimination against individuals with disabilities by excluding or denying them services. In Olmstead v. L.C., the U.S. Supreme Court ruling requires states to eliminate unnecessary segregation of persons with disabilities and ensure they receive services in the most integrated setting appropriate to their needs. The decision was based on an incident in the state of Georgia where two women were prevented from transitioning from an institution to a community living placement, even though their medical professionals had determined they were capable of living in the community.
Under the Olmstead Decision, states are required to provide community-based services for persons with disabilities who are otherwise entitled to institutional services when the state’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement is reasonably accommodated.
Since the Olmstead Decision, housing and discrimination suits have continued to appear in courts across the U.S. In West Virginia, a woman attempted to rent an apartment for herself and her autistic brother. The landlord insisted she purchase a $1 million insurance policy to cover any damages or injuries her brother would potentially cause. The woman filed a complaint with HUD, who investigated the case and recently ordered the landlord to pay $34,000 in damages and penalties.
Until the FHAA of 1988, it was legal in the U.S. to discriminate against a person with a disability attempting to rent or purchase a home. Over 53% of discrimination complaints which HUD receives are from people with disabilities.
Steward v. Perry: On September 20, 2012, the United States was granted its June 2011 request to intervene in a pending lawsuit against the State of Texas alleging violations of Title II of the ADA and Section 504 of the Rehabilitation Act for unnecessarily segregating individuals with developmental disabilities in nursing facilities. The case affects approximately 4,500 adults with developmental disabilities who are currently confined to nursing facilities and thousands more who are at risk for such placement.
Integrated housing and segregated housing are both viable living options for people with disabilities. It is important to remember that when it comes to housing there is not a one-size-fits-all answer. Everyone has a right to choose a living environment that suits his/her needs and preferences.
People with disabilities need more housing options, not fewer ones. As habilitation centers are closed, and more people are transitioned into community settings, the waiting lists increase. They need a balance of housing alternatives. Aging parents are concerned about the future of their adult children, some of whom have never lived anywhere else but in their parents’ home. Where will these individuals go when their parents pass away?
Having enough housing is a major concern, but having affordable housing is another. People with disabilities need safe, clean housing, which they can afford on a limited income. Perhaps educating landlords and homeowners about financial incentives, or informing them about how to qualify as HUD-approved housing is a start. Perhaps another is to improve the public’s perception and attitude about people with disabilities. Individuals with disabilities have the right to live as independently as they are able without fear of discrimination.