The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Housing Options

In making decisions about living arrangements, individuals and their families must weigh their desires, their independent living skills and their available resources. There are several types of options:

Leisure-Based or Dayhab Programs

Some families may prefer a program that places few demands on their family member with a disability. These programs are generally operated by a private vendor under contract with a government-supported agency such as the Department of Mental Retardation and are usually supported by Medicaid. Activities may include community outings, recreation and life skills.

Community Living Options

Even if an individual with Down syndrome is living on the campus of a college or postsecondary program, he or she will need to plan where to live after finishing the program. The number of options is growing, particularly as people with disabilities are encouraged to take control of their lives and support services. The following are some of the options to consider.

Privately, Personally Owned Housing

Some individuals live in personally owned or controlled apartments or houses. In some states, the Home of Your Own program has helped to initiate and expand these opportunities. The importance of individuals owning or controlling (through lease agreements) their living environments cannot be overstated since so many decisions (roommates, furnishings, house routines) should be in the hands of the individuals.

Vendor-Owned

Vendor-owned homes or apartments are the most available and recognizable living environments. Over the years, we have called them group homes, community residences, congregate housing, etc. While many of these provide excellent opportunities for growth and deliver good services, some other entity (provider, management agent, state agency, etc.) makes many important decisions about the house, even choosing the support people who work there. This limits the amount of control families and the people who live there have over their living situation.

Shared Living

Shared living is where two or more people live together in a house or apartment. Those who do not have a disability provide support for the person who does. Take, for example, "Eric," a young man with Down syndrome who needed more support than he would have received living alone in an apartment. His family wanted more individualized support than a group home would be able to provide. Their solution was to find a roommate for him, a student at a local community college who provides the safety net that Eric needs to live in his own apartment. Eric's roommate is compensated for his time and support with a salary and reduced rent. Some families pay a direct salary to their child's roommate and others provide other compensation such as food or transportation.

Foster Homes

Some people do best in family units. For these individuals adult foster care may be a great opportunity. This model is sometimes hard for families to consider because they have been conditioned to think that when their children are ready to leave our home, it must be to go live in one of the options described earlier. Families are reluctant to embrace the possibility that the growth and independence of their child might be achieved within another family. This can be a missed opportunity for some individuals who would thrive in a family that is not their own. This does not mean that the person's own family is lacking; it simply means that many people are not able to create the opportunities for risk and growth within their own families.

Many people end up choosing some combination of the housing options listed above.  By arriving at creative solutions, individuals and their families can find the housing that is the best fit for their abilities and desires. 

Funding Options

When considering housing, it is important to have a clear understanding of the sources of income available.   The following are some potential sources of funding to consider when looking for additional financial support:

Wages

  • Supplemental Security Income (SSI)/Social Security Disability Income (SSDI) 
    www.ssa.gov/about.htm
  • Department of Mental Retardation or other state agency support (including Vocational Rehabilitation)

Family Contributions

  • Section 8 or other housing subsidy
    http://portal.hud.gov/hudportal/HUD
  • Medicaid or other health insurance
    www.medicaid.gov
  • Medicaid Waiver Programs: Each state has a variety of waivers designed to promote community living. The waivers are specific to each state.

Each of these funding options is a complex and sometimes confusing maze to navigate that goes beyond the scope of this article. Be a good investigator and know what the limitations of each funding program are so you do not get caught off-guard and lose the money or benefits you are depending on. In addition to the professionals at the programs listed above, the families of other individuals with disabilities can be excellent resources. Let their experience and knowledge guide you.

***
Adapted from Thinking About Tomorrow: The Transition to Adult Life by Jo Ann Simons as it appeared  in Disability Solutions, Volume 6, Issue 1 


Internal Resources

External Resources

  • The Arc
    www.thearc.org
    Advocates for and serves people with intellectual and developmental disabilities and their families
  • Community Options, Inc.
    www.comop.org
    Empowers people with disabilities through independent living
  • Independent Living Research Utilization - Directory for Independent Living
    www.ilru.org/html/publications/directory/index
    Provides an array of independant living services and is designed and operated within a local community by individuals with disabilities 
  • National Adult Day Services Association (NADSA)
    www.nadsa.org
    Advances the national development, recognition and use of adult day services
  • National Resource Center for Supported Living
    www.homemods.org
    Promotes aging in place and independent living for persons of all ages and abilities

BOOKS

  • Moving Out: A Family Guide to Residential Planning for Adults with Disabilities. Krouk-Gordon, D and Jackins, B. Bethesda, MD: Woodbine House. (2013)

  • Buddy Walk
  • NDSS Yourway
  • My Great Story