Transition is a critical time for young adults. According to the Individuals with Disabilities Education Act (IDEA), school systems are required to begin transition services when youth reach the age of 16 years (some states do require it to start at 14 years). IDEA is the law for special education and include a section on transition. Regulations define what transition services are. Transition services are defined to be a coordinated set of activities which facilitate the child’s movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation. 1
As you can see from the federal regulation based on IDEA, accessing services for adult life should begin during the school years. However, to access services, it’s critical to understand what you (if you’re the individual with ASD) or your family member needs. To do that one needs to develop a framework or plan to identify the services needed and then take steps to obtain those services.
This article suggests a framework to utilize in planning for housing for an adult with ASD. It identifies existing programs, funding and tools while providing recommendations for an adult with ASD to achieve a full life. The authors are presently working on a more comprehensive planning resource for families to develop an appropriate housing model in their next book that is scheduled for publication in January 2013.
The Increasing Need for Supportive Housing
One of the biggest service needs is that for housing, or residential supports. The need for housing for adults with autism or autism spectrum disorder (ASD) will grow along with the developmental disabilities population in general. “Open Doors” published in 2010 about housing needs in Arizona reported that a conservative estimate of 400,000 persons with ASD will make the transition process to adulthood in the next 15 years.2
This is only one of many reports that reference a growing need for housing for persons with autism and developmental disabilities. A television news story reported in November 2010 in Indiana confirmed that state employees considered homeless shelters as a legitimate referral point for persons with disabilities who can no longer be supported or cared for by family members.3
“Awash in Autism,” released in 2010 by Advocates for Autism in Massachusetts,4 focuses on the current and impending housing crisis. The report asserts that, “For years it has been assumed that adults with autism could be served by programs and supports created for people with intellectual disabilities, without taking into account the unique communication, sensory, environmental, social and behavioral factors that distinguish autism from other intellectual disabilities.”
Consequently, when considering residential services for individuals on the spectrum, it’s important to discriminate between what is applicable in the disabilities field versus the specific requirements for individuals with autism or on the spectrum. In this manner, individuals, family members and other interested parties can avoid re-inventing the wheel, taking advantage of service models and planning tools that already exist for persons with developmental disabilities while addressing specific needs that they or their family member may have.
The following are key components to consider in building a framework for housing beyond the school years.
A Person-Centered Approach and an Individual Plan
A Person-Centered Approach and an Individual Plan should be the foundation of the framework. It’s important to assess any housing options through the lens of what the individual’s needs, skills and desires are. There are tools on the web which can guide an individual/family through this process. An individual plan should consider the whole life of the individual, not only housing. Can he/she be alone during the day? What are his/her employment possibilities? Is further training needed or job supports? How will he/she maintain a social life and other interests such as religion, hobbies, family get-togethers, sporting events, etc.
Requesting a person-centered transition plan during the school years is strongly recommended. This is a resource that is a right as educational services (See IDEA, Individuals with Disabilities Education Act) are an entitlement. At age 16 years, school systems are required to develop a transition plan for adulthood or adult life. Too few people take advantage of this requirement.
Government Benefits and Programs
Government Benefits and Programs for funding sources can make a difference in your plan. Researching and understanding government programs such as social security or funding through state specific disability agencies are critical. Social Security provides adults with disabilities a monthly benefits payment and health insurance if they meet a low income threshold. Keep in mind the $2,000 asset limit for Supplemental Security Income. For more information visit www.ssa.gov.
Each state varies in how services and funding to individuals are provided despite national legislation and regulations which guide the delivery of services such as health care, education and long term care. In some states there may be specific programs for adults with ASD while in other states one has to go through one or more state developmental disabilities agencies. For example, residential services may be possible through one state agency but employment training or support may have to be accessed through the state vocational rehabilitation agency. As soon as you identify the agency that is relevant, and which provides services you require, ask for an application to begin the process.
A family’s personal Financial Planning will have a large impact on the ability to continue to pay for the housing model both during the life of the parent(s) and upon their death. Since government resources are continuing to shrink and the need for services is continuing to increase, obtaining public funding for residential supports in non-emergency situations will continue to get more difficult. Because of this it is important to build a plan that involves personal resources. Since parents have to plan for both their own financial security as well as the security of their child it is important to prioritize your goals.
What makes residential planning for an individual with special needs particularly challenging is that until the person reaches the age of 22 it can be difficult to project the exact dollar needs. It might help to break down the need into three components; day services, residential supports and the cost of the physical structure. Then attach income sources for these estimated expenses where possible.
Working with a Certified Financial Planner™, who is knowledgeable in special needs planning, will help you to identify what it takes for you to achieve your personal security and then overlay the needs of your child on top of your plan. The key is, simply begin to save! As basic as this sounds, we find that all too often parents plan on paying for their child’s college educations, and ignore saving for their son or daughter that has special needs.
There are several Legal Planning possibilities here that can protect the individual with ASD while maintaining as much independence as possible. When the child reaches age 18, there must be consideration for guardianship, or the less restrictive alternatives such as limited guardianships, conservators, representative payee, health care proxies and power of attorney. Beyond the well-known special needs trust planning, there is a continuum of safeguards that can be utilized in decision making. The decision of home ownership, i.e. the parent, individual, trust, or other entity should be considered carefully and with consideration for protecting and accessing government benefits. Working with an attorney who is knowledgeable in disability law will be beneficial.
Housing Services Agency
The Housing Services Agency that will provide services should be an experienced agency who has demonstrated a commitment to supporting individuals with ASD. This should include specific training programs for staff with a well-documented understanding of the unique needs of adults with ASD.
Using the person centered plan to compare options and alternatives, visit a few homes to get a sense of what might be available. This includes different types of housing (condominium, apartment, and house), the size (number of roommates) and the level of support needed (24 hours, part-time, drop in) and special requirements for medical needs, transportation, and social activities.
Employment and/or Day Programs
Explore Employment and/or Day Programs that might be appropriate to the abilities. What are the possibilities of employment? If not full-time, what are the activities during the day that will complement or take the place of employment? In the transition plan, the choice of a secondary school has a big impact on preparation. If someone is interested in a technical career, he/she may want to choose a secondary school that has that type of curriculum.
Consider Health Care needs including behavioral health needs of the individual and roommates. Is there a specific plan in this area so that the adult can either manage his/her health care or has the support to do so? This includes prevention strategies as well as the ability to address illnesses or health conditions in the future as they arise.
Beyond the physical home, incorporating the social needs of individuals helps to build a full life. Supports for unique lifestyles, friendships, families, social/leisure, recreation, hobbies, religion, traditions and the like should be incorporated in the planning and budgeting process.
This outline is a beginning step in development of a framework for planning. Without a guide, persons with ASD and families are leaving the future to chance. Although planning cannot eliminate all the unknowns that exist, it can provide a solid foundation for a good life in the community.
For further information, or to learn more about the authors, please contact us:
Mr. Nadworny and Ms. Haddad are Directors of Special Needs Financial Planning Division of Shepherd Financial Partners 1004 Main Street – Winchester, MA 01890 (781)-756-1804 or website at www.specialneedsplanning.com. (They are both Registered Representatives of LPL Financial).
Mr. Sarkissian is Executive Director of The Arc of Massachusetts 217 South Street – Waltham, MA 02543 (781) 891-6270 or website at www.arcmass.org.
- 2004, IDEA, excerpted from regulations on transition, www.idea.ed.gov; choose Part B
- The Urban Land Institute, Southwest Autism Research and Resource Center and University of Arizona; www.autismcenter.org/documents/openingdoorsebook
- News story 11/82010, rtv6-IndyChannel; www.theindychannel.com/news/25688588/detail.html and cited by Disability Scoop
4. 2010, Advocates for Autism in Massachusetts with research by the Lurie Institute for Disability Policy, Heller School for Social Policy and Management at Brandeis University, www.afamaction.org/AFAMASCReport2-10-10final.pdf