Independent Living

For people with disabilities, the everyday tasks of independent living can present unique challenges, but with assistance and social supports in place, they can enjoy many of the same opportunities and control in their everyday lives that their non-disabled neighbors, family, and friends take for granted. This page will give a brief overview of several areas to consider with links to pages with more information, local service providers, and other web sites.

Financial Supports

Every state has identified agencies that provide funding and support for people with disabilities, and the names of these agencies may be different in each state. People who receive government benefits such as Supplemental Security Income (SSI) may have more available resources for financial assistance and services than those who do not qualify for government benefits. They may also have access to more service providers. People who do not receive government benefits and are employed may access some services through community organizations such as independent living centers or councils. For more information, see Disability Resources and National Council on Independent Living (NCIL).

Housing and Independent Living

One big step of transitioning to adulthood can be the change in where the young adult lives. Planning for this should happen throughout the teenage years to give the young adult the skills to be ready to make this choice. Young adults should know that where they live will be based on many things.
Some young adults will stay at home, some will move into college housing, some will live with friends or family members, and some may move into assisted living or a group home. Some will even move to an apartment or house on their own without roommates. Things to think about when making this decision are:
  • Physical and cognitive abilities
  • Independent living skills
  • Finances and financial aid
  • Family and caregiver support
  • Comfort with different living arrangements
Young adults who have problems with managing money, time, cooking, cleaning, and transportation should think about living at home with family members until they build these skills, no matter their ability or disability. Families with young adults that have behavioral problems that put themselves or family members at risk for harm may want to look at assisted living or group homes. Young adults who are going to college or work may want to look at shared living arrangements such as college dorms or shared apartments as starting points.
**Any young adult should have a support system in place to help in case of emergencies or when they need help.
Transportation, income and insurance, and activities should be considered when choosing where to live. No matter where they are living, young adults and their families should think over daytime activities for them near home (see Employment/Daytime Activities). For example, living at home may be cheaper than living in a college dorm but may have more costs for transportation and may take more effort to get to school. Some daytime activities are:
  • Full-time or part-time employment
  • College, vocational schools, or other training programs
  • Day programs
  • Volunteer programs
  • Recreational activities

Living with Parents/Family

Most young adults will live with their parents, guardians, family, or family members for some period of time after their 18th birthday or after high school. Young adults are often still learning the skills they need to live on their own or are not able to pay for their own apartment or house yet.
Young adults with intellectual disabilities or some physical disabilities may need to keep living with their parents or family and have caregivers that know their needs. Finding accessible housing or financing private caregivers is not always easy for young adults to do on their own.
When deciding to live with parents or family members, these things should be kept in mind:
  • The young adult's disability and independence skills
  • The family members' skills and ability to care for the young adult
  • If the young adult will work, and if so, where?
  • Transportation to work, health care, recreation, and other places
  • How the young adult will pay for housing and other expenses
  • The total costs of housing, utilities, food, transportation, recreation, and other living expenses
  • The young adult’s eligibility for care and support services and how different living options may support or risk eligibility

Community Living Supports

These supports cover a wide range, from dependent-based facilities to a more independent setting where people are encouraged to develop necessary skills to become homeowners.
State disabiliy agencies can provide information about options in your state and community. For more information: Adult Day Programs (see RI providers [1]), Supportive Housing & Residential Care Homes (see RI providers [4]), and Independent Living Arrangements & Skills (see RI providers [20]).

Residential Services

People with special health care needs may be eligible for services to help them live at home with Medicaid programs or waivers (see Financing Your Child's Healthcare). Waivers are designed to help the person to:
  • live at home
  • or in a supportive setting, at a lower cost than living in an assisted living facility.
Services depend on the specific disability and needs. People with special needs might start using residential services when they still live with their parents. Young adults with residential services may be able to live on their own or with roommates.
Young adults should find out what services there may or may not be for the living arrangements that they are thinking about. While they may want to live far away from parents, the finances and limits on services may be more important. Households should also explore creative solutions such as finding out if a space on the family’s property, such as a garage apartment, would allow the young adult greater freedom without putting care or services at risk. With a garage apartment, mother-in-law, or other types of homes on the family property, the family should call the city to find out if local building codes will allow these dwellings.

Assisted Living

Young adults who need care and support that their families are not able to give may want to look at assisted living facilities. Young adults who need twenty-four-hour care or that have behaviors that place themselves or others at risk may need an assisted living setting. These facilities have skilled care and structured activities for residents. Facilities may be limited in rural areas and will usually have visiting hours for families. Families should meet and talk with the administration about the needs of the young adult and the care that they offer. Families should also this check with their health insurance provider since assisted living is often one of the more costly options.
Some things to keep in mind are:
  • Level of care
  • Types of disabilities served
  • Private or government financing
  • Compliance with regulatory agencies
  • Social, educational, and recreation activities offered
  • Type, level, and licensing of professional staff
  • Ability of the individuals to leave the facility for social or work opportunities
  • Place in the community or distance from family and friends
  • The feel of the facility (like a hospital or a home)

Group Homes

Young adults may choose to live in a group home with other adults in a supervised and supported environment. Group homes, most often a house in a residential neighborhood, offer a family-type setting. Staff provides training in independent skills and the residents share in the work of the household, like a family working together. The residents may also be working outside of the home or doing some other community activities during the daytime. A group home may be a way for young adults to transition from living at home to a more independent living setting in the future or it may be a more permanent living situation.
Young adults should fully explore the group home to make sure it will fit well with their disabilities, wants, and needs. Just like every family has its own rules, every house has its differences. Families should ask about:
  • Household chores
  • Choices for work
  • Transportation options
  • Options for personal care/support
  • Curfews
  • Accessible rooms
  • Emergency plans
  • Staffing levels
  • Daily routines
The location and support from their local neighborhood and city should also be considered. Families may want to think about if they want their young adult to live in a home with people with like disabilities, for the sake of household routines, or in a home with people who have other disabilities, for diversity. Families should also study costs and how long they think that the young adult will live there.

Home-Ownership/Renting

Today, people with disabilities have many options for owning their own home, but it may take time, persistence, and patience to realize this goal. Many of the available resources have long waiting lists for housing services. Resources to facilitate home ownership include: housing authorities who can provide rental subsidies; community development agencies; resources for making a home accessible; and financial assistance and savings programs. For more information: Supportive Housing & Residential Care Homes (see RI providers [4]) and Housing, Other (see RI providers [11]).
Section 8 Housing
Young adults with disabilities may be eligible for the Housing Choice Voucher Program, one program under Section 8 of the Housing Act of 1937. The vouchers can be used for rental or toward buying a home. The young adult will need to find a place to live and the voucher would be used toward the rent amount, paid directly to the landlord, with the rest of the rent and deposits paid by the young adult. Income and other rules may apply and there are often waiting lists for the program. Young adults should call their local Housing Authority for details and to apply. People in the program must keep the apartment or home in good shape and let the Housing Authority know of any changes, such as the number of people living in the apartment and income.
Other resources to help with home ownership are:
  • Community development agencies
  • Resources for making a home accessible
  • Financial assistance and savings programs
Please see Housing, Other (see RI providers [11]) or search our Services Directory for related services.

Transportation

People with a disability have many transportation options, including public transportation, private services, or getting a driver's license. Whether mobility is achieved through accessing public transportation, using private services, or getting a driver's license will depend on the desires and abilities of each person. For more information, see Transportation Options for Young Adults.

Money Management

Many people with disabilities can learn to manage their own money and there are options for those who need additional instruction and help. Money Management is a learned set of skills that includes many topics, such as:
  • identifying the value of coins and paper money
  • making change
  • managing income from employment or programs like SSI
  • paying bills
  • writing checks
  • saving money
  • balancing bank accounts
Budgeting income and expenses, handling credit cards, applying for loans, and investing for retirement are more complex skills that many adults struggle with, but can be learned with more effort. For youth who are still in the school system, basic money management skills can be included in their Individualized Education Plan (IEP). There are also community-based resources such as Independent Living Centers and financial counseling organizations that teach money management skills. If a person is in a supported living situation, money management skills can be provided and/or taught within that setting. For people with complex disabilities, a fiscal agent can manage their money. For more information, see Financial Education & Counseling (see RI providers [6]).

Employment

If employment is an option, government agencies and community organizations offer services and programs to help prepare young adults for jobs. For more information, see Employment/Daytime Activities.

Social and Recreation

Many people with disabilities have difficulty with social opportunities outside of the home. However, it is important for young adults to have social outlets in areas of their interests, e.g., arts, crafts, dances and recreation. For more information, see Recreation Activities and Social Opportunities.

Sexuality

If we accept that sexual expression is a natural and important part of human life, then perceptions that deny sexuality for people with disabilities deny a basic right of expression. The perception of people with disabilities as non-sexual can present a barrier to safe sex education, both for health care workers who may be influenced by these views and for people with disabilities themselves, in terms of gaining access to information and acceptance regarding sexuality. For more information, see Healthy Relationships.

Spirituality

For youth seeking independence from family, spirituality may become more important, whether or not it is connected with any particular religion. For information, see Spiritual Needs.

Guardianship

When a child turns 18, he or she is considered a legal adult, which brings the rights, responsibilities, and consequences of their choices. For a child who, because of their disability, is unable to make decisions in their own best interest, parents should consider applying for guardianship when the young adult is approaching 18. As with any child, parents do not automatically remain the child's natural guardian when their child with disabilities turns 18. For more information, see Guardianship/Estate Planning.

Health Care Funding

Continuing health care coverage is essential for those with special needs. Some individuals may continue indefinitely on their parents' insurance policy. Others may qualify for Medicaid, Medicaid D (disability) or insurance from their employer. To apply for Medicaid, contact your state Medicaid agency. For more information see Health Insurance/Financial Aids.

Personal Needs

Personal needs can include independent living supports such as transportation, skill training, job coaches, and personal assistants for completing activities of daily living. Independent living centers, state government services, and community organizations are available resources to help identify providers for the all kinds of personal needs. For more information, see Independent Living Arrangements & Skills (see RI providers [20]), Vocational Education (see RI providers [12]), and Supportive Housing & Residential Care Homes (see RI providers [4]).

Resources

Information & Support

For Parents and Patients

National Council on Independent Living (NCIL)
Provides information and advocacy for independent living with links to locate state or local independent living centers.

Center for Parent Information and Resources (DOE)
Parent centers in every state provide training to parents of children with disabilities and provide information about special education, transition to adulthood, health care, support groups, local conferences and other federal, state, and local services. See the "Find Your Parent Center Link" to find the parent center in your state; Department of Education, Office of Special Education.

Disability Resources
US Department of Labor's Disability Resources web page. See also Office of Disability Employment Policy (ODEP) homepage: https://www.dol.gov/odep/

Youth Leadership Toolkit
Good video site for youth and young adults to learn about employment and related topics in an easy access online format. Developed by Independent Living Research Utilization (ILRU) in collaboration with the Center for Persons with Disabilities and the Becoming Leaders for Tomorrow Project.

Ready Set Go Checklist (PDF Document 3.4 MB)
A series of checklists to help young people think about planning for their future: Ready, Get Set, Go. Provided by Rhode Island Department of Health and adapted from Bloorview Kids Rehab, Toronto, CA.

Competencies for Young People Transitioning (TEACH) (Word Document 24 KB)
A suggested list of competencies that young adults should have as they transition to post-secondary school or work. Topics include health condition, medical providers, insurance, independent living, recreation, and other general skills; from the Kentucky TEACH Project.

HUD.GOV
U.S. Department of Housing and Urban Development page for Housing Choice Voucher Program.

Services for Patients & Families in Rhode Island (RI)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: December 2005; last update/revision: September 2020
Current Authors and Reviewers:
Author: Alfred N. Romeo, RN, PhD
Contributing Authors: Robin Pratt
Barbara Ward, RN BS
Gina Pola-Money
Joyce Dolcourt
Kristine Ferguson
Teresa Such-Neibar, DO
Lynn Foxx Pease
Helen Post
Roz Welch
Reviewer: Tina Persels
Funding: Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.
Authoring history
2019: update: Tina PerselsR
2008: first version: Alfred N. Romeo, RN, PhDR
AAuthor; CAContributing Author; SASenior Author; RReviewer