Saturday, March 12, 2016

Getting Ready for Independent Living at the Age of Majority

When young people with disabilities reach the “age of majority,” they gain the right to manage their own affairs, including where they will live and what they will do. In most states, this happens at age 18. Legally considered as adults, they may take charge of their own housing and daily-life decisions, both large and small. But will they be ready to make such decisions for themselves? Will they have the skills and basic information they need to live as independently as possible?
This tip sheet considers steps that you (as parents) and others (such as teachers or transition specialists) can take to help your young person with disabilities learn and practice the basic skills that underpin independent living, skills that will certainly come in handy in the future.
Quick-Jump Links
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Developed by:
National Secondary Transition Technical Assistance Center (NSTTAC)
National Post-School Outcomes Center (NPSO)
In collaboration with:
Center for Parent Information and Resources (CPIR)
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The Importance of Starting Early

Living independently—even with supports—involves many skills. Starting with the most basic, it’s about having daily living skills, which include grooming and hygiene, maintaining personal safety, and knowing how to take care of yourself. These are skills most of us learn over time at home and at school, and they provide the foundation for future learning about what it takes to live independently.
For many young people with disabilities, daily living skills can be challenging. That’s why it’s important to start early working on developing these skills. There are many tools available that schools and families can use to do just that (see the list of Helpful Resources at the end of this tip sheet). Take into consideration where your child needs help with daily living activities and what he or she already knows and can do. Also:
  • Use the IEP meeting to advocate that your child’s IEP include goals focused on gaining the daily living skills he or she needs.
  • Practice the skills at home, too, so that your son or daughter learns over time how to do tasks such as laundry, dishes, or cleaning.
All this lays the foundation for later, when your child becomes a youth, then a young adult, then an adult who’s as independent as he or she can be.

Areas of Daily Living to Consider

Daily living skills are those common activities that most adults engage in as they manage their own daily living and quality of life. These include but aren’t limited to:
Using self-care skills (e.g., appropriate hygiene care, grooming, dressing, meal preparation, and laundry)
Eating, toileting, bathing, dressing
Participating in recreation and leisure activities
Demonstrating awareness of personal safety in the home
Taking medications as directed and seeking medical care when needed
Providing accurate information about one’s medical condition to appropriate personnel
Making appropriate decisions concerning relationships
Understanding what is involved in managing a home
Demonstrating the ability to vote and make informed decisions
Deciding and directing the kinds of assistance or supports needed or wanted, including using assistive devices and/or technology in the home and community
Using transportation in the community as independently as possible (e.g., knowledge of community bus, taxis)
Applying for adult services and accessing services/supports necessary for success in the community (e.g., on-the-job training, employment)
Which of these (and other) daily living skills are currently challenges to your son or daughter? Which will always be a challenge? Which can be and need to be learned?

What About Guardianship?

Despite getting an early start learning skills that will help them live independently, many youth with disabilities (and many without!) reach the age of majority but are not yet ready for, or capable of, living entirely on their own. Some parents may consider assuming guardianship of their son or daughter as a way of protecting their child’s well-being.
Assuming guardianship of your son or daughter is one option for protecting his or her day-to-day safety and well-being in the future. Depending on the severity or nature of your youth’s disability, it may be an option worth exploring. However, be aware that guardianship is one of the most legally restrictive forms of support. It can also have negative effects on the individual. For instance, when a youth is denied the opportunity to make decisions about how he or she will live and where, or to participate in a shared decision-making process, he or she is also denied the opportunity to develop. This can lead to a sense of helplessness and passive dependence. Therefore, it is important to realize that many young people with disabilities can be adequately supported in adult life without a guardian.
Given that, consider what’s involved in daily living, as well as where and with what tasks your son or daughter will need support in order to live apart from you. There are many support systems and strategies available that can help. We’ve listed examples in the next section.
For More Information on the Pros and Cons of Guardianship
National Guardianship Association (NGA)
http://www.guardianship.org/index.htm
Understanding Guardianship and the Alternatives for Decision Making Supporthttps://www.youtube.com/watch?v=0xXELClMHHE&feature=youtu.be

Strategies for Providing Support

Given your son or daughter’s specific needs for support in daily living activities, what types of assistance are available and appropriate? Consider, for example:
Using supports/family that the young adult trusts and could call or contact for guidance when needed
Using in-home care services (e.g., nurse, therapist,  dietician) for meals, medication, therapy, and to assist with your son or daughter’s care needs
Using adult service providers who specialize in supporting adults with developmental disabilities. These agencies offer a number of group living arrangements and can hire staff to meet your son or daughter at your home or apartment to help with challenging aspects of independent living.
Using free or reduced-price meals, food, and prescription delivery from community agency services
Using free or reduced-price transportation services from community agency services
Arranging daily call services with a community agency or advocacy organization to ensure your son or daughter is doing well and to obtain assistance as needed

In Summary

When youth with disabilities reach the age of majority, they have the right to make independent decisions on where they would like to live and/or what they would like to do in their life. The issue then becomes whether young adults with disabilities are prepared for being able to live on their own.
This tip sheet highlights the importance of starting early when your child is young and helping him or her learn independent living skills, especially daily living skills in the home. It’s also very important to consider what types of support need to be put in place (e.g., in-home care services, transportation services) to assist your son or daughter with independent living issues when he or she reaches the age of majority.

Helpful Resources

Independent Living Connections.
This webpage connects you with checklists and resources on self-help and autonomy skills. You can use these resources when discussing independent living skills  with your son or daughter during transition planning.
http://www.parentcenterhub.org/repository/independent/
Independent Living Centers.
Independent living centers (ILCs) are nonresidential, community-based agencies that are run by people with various disabilities. ILCs help people with disabilities achieve and maintain self-sufficient lives within the community. Operated locally, ILCs serve a particular region, which means that their services vary from place to place. ILCs may charge for classes, but advocacy services are typically available at no cost. Find your local ILCs at:
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
Your state’s agency for individuals with intellectual and developmental disabilities.
Get in touch with this agency, visit its website. See what community-based services are available. Find yours at:
http://www.nasddds.org/state-agencies/
Your state’s protection and advocacy agency.
P&A agencies have the authority to provide legal representation and other advocacy services, under all federal and state laws, to all people with disabilities. Find yours at:
http://www.ndrn.org/ndrn-member-agencies.html
A Step-by-Step Guide to Training and Managing Personal Assistants:
Consumer Guide.
This guide provides information, tips and suggestions for training and managing people who provided personal assistance services (PAS). These services help people with disabilities with everyday things like bathing, dressing and running errands.
http://search.naric.com/research/rehab/download.cfm?ID=109225
National Resource Center for Supported Decision-Making |  The NRC-SDM provides leadership and expertise in supported decision-making and has applied supported decision-making in groundbreaking legal cases; developed evidence-based outcome measures; successfully advocated for changes in law, policy, and practice to increase self-determination; and shown that supported decision-making is a valid, less-restrictive alternative to guardianship.
http://supporteddecisionmaking.org/

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