Everyone wants to live their own life. It’s a watershed moment in a person’s life to know that they’ve achieved their own freedom; the ability to push back real or perceived boundaries to gain more control over life’s path is the cornerstone of transitioning into adulthood.
Living independently is more than an option
A person with disabilities is no different from anyone else when it comes to questioning their own decisions, the most important of which is, “How can I live a fulfilling, independent life? How can I, in my condition, call the shots?”
Helping a child make the jump from dependence to independence is a process that begins shortly after the child’s diagnosis. The physical therapy a child undergoes throughout his or her life will maximize his or her ability to function inside and outside the home. Occupational therapy can teach a child how to work within his or her condition to perform tasks such as eating and self-care.
Whether it’s doing for oneself completely alone, or taking advantage of help when it’s needed, there’s a variety of ways a person with disabilities can pursue goals such as employment, a family or travel. It just takes the right familial and community supports.
What does it mean to live an independent life?
Living independently means living life based on one’s own goals. To live independently means that a person chooses where they live, where they will work, what activities they will take part in, and how to spend his or her money.
For people that have mild disabilities, this is easily achievable. What many parents cannot conceive is that independent living is a possibility for people with severe disabilities. People with more severe forms of Cerebral Palsy have also thrived in their professions, marriage and having children. They’ve participated in activities as diverse as mountain climbing to writing and publishing books.
Living independently means being able to:
- Do as much as possible without help
- Accept responsibility for oneself
- Cope with changes
- Follow directions and guidelines
- Choose companions and friends
- Arrive at appointments on time
- Perform self-care, everyday tasks
Living independently means that a person with disabilities will manage the following aspects of his or her life:
- Where to live
- Where to attend school or training
- When to accept help with daily tasks
- Whether to hire personal assistants
- How to allocate his or her government benefits or salary
- What activities to engage in
- Where to seek medical treatment
- Where to work
Living independently, however, does not mean that a person will not need support from time to time. In this circumstance, a person can make use of personal assistants or have a family or friend handle a few tasks. Often, the situation does not mean that someone must live with another person full-time.
To achieve the highest level of personal autonomy, a person must be willing to consider:
- Whether personal assistants will be needed
- If a person has support from families or friends
- Whether a living space in conducive to person’s needs
- If a person has confidence in his or her ability to live independently
- What setting – be it at an apartment or an assisted living arrangement – would provide the highest level of freedom
- Whether he or she is able to operate a personal vehicle, or use public transportation
Living independently does not mean that a person has to give up his or her government benefits if they receive them; unless a time comes when his or her income is too high to receive support. In fact, the existence of these benefits coincides with independent living.
Some forms of government support that can help a person live independently include:
- Temporary Assistance for Needy Families
- Publicly-subsidized housing
- Supplemental Nutrition Assistance Program
- Medicare or Medicaid
- Adaptive construction funds
- Education services
When does a child begin to assert his or her independence?
Children seek adventure and freedom from infancy; it’s natural for a child to want to learn how to act on his or her own. Children with disabilities may not be able to express this physically without assistance, but in other regards, they’re the same as other young people their age. They want to express themselves, try new things, and make decisions.
Because interventions begin after a Cerebral Palsy diagnosis – usually when a child is an infant – the drive for independence will not decrease, it will increase. Although task completion is achieved through alternative means, the fact that he or she can perform tasks proves the point that a person has options outside of his or her home. It’s a positive message that should be reinforced at every turn.
What independent living options are available?
One misconception that people have about independent living is that it means a person will be on their own without assistance. Today, that’s just not the case.
With the advent of personal assistance, combined with other resources, people with disabilities have more choices than they initially realize. And just because someone needs assistance with some tasks doesn’t mean he or she should live in a situation with little autonomy and too much dependency.
Some of the independent living options that should be considered include:
- Living with relatives or caretakers – This can be an independent living arrangement if the relatives respect the choices of the person with special needs. In this arrangement, a person should control his or her finances, and medical decisions. If necessary, this arrangement should be laid out in writing.
- Living in a group home – Group homes typically house about five individuals, and provide essential services like self-care and meals.
- Assisted living – This is an arrangement where a person rents an apartment and receives services such as self-care assistance and meal preparation.
- Public housing – Publicly-subsidized housing is income-based; there are no services provided.
- Personal home – People with special needs purchase or rent homes all of the time. The home, however, needs to meet physical requirements. If it does not, there are government subsidies available for modifications.
- Institutional settings – This arrangement means that a person lives in a room, sometimes with a roommate, at an institution. Of all of the options, this one provides the lowest level of independence.
How can parents prepare a child for an independent life?
The seeds on an independent life are sown when people most dependent on others – during childhood. For parents – especially if a child has a disability – it can be hard to think about a daughter or son’s need for independence; it seems like there’s so much more to worry about.
When a child aims to take his or her first steps, or asks to spend the night with a friend, what they’re really asking for his independence. And those requests are unlikely to stop; in fact, they are likely to become more frequent as a child grows up.
It’s natural for parents to be apprehensive about a child’s need for independence. For a child to fully realize his or her potential, encouragement is required. There’s no better person to provide that positive push than a parent.
Much of what a child learns about independence is acquired in therapy. Mobility issues are addressed in physical therapy. Fine motor skills are addressed in occupational therapy. Other skills are addressed at school, or in a professional setting. If, at any time, a parent feels a child is not receiving proper intervention, he or she should address that concern with educators or medical professionals.
If a child wants to live independently, here are some factors parents will need to address:
- Housing – Whether a person decides to live alone or with assistance, he or she will need adequate shelter. Parents can assist in making that decision – without imposing their will – by helping identify what home meets the needs, whether modifications are needed, and whether assistance is needed to function within the home. Maintenance is also another issue that would need to be probed further.
- Adaptive equipment – To function independently, many people need assistive technology to perform daily tasks. A phone might need TTY services, a computer might need a touch screen, a manual wheelchair might be needed to navigate the home. Young people coming out of the school system are typically assessed for such needs, and there are resources available to help people obtain adaptive equipment.
- Finance – To live independently, a person needs to understand the intricacies of his or her financial situation. In preparation for a child to live independently, it can be beneficial to explain to a child where money is coming from, and what it pays for. A person with disabilities might be getting income or social services from several sources; some are earmarked for specific purposes. For example, if a person needs to sign up for SNAP assistance, he or she needs to know what it covers and what it doesn’t. There’s also the matter of general financial acumen; people leaving home for the first time need to understand the importance of paying bills on time, what to do if he or she cannot pay a bill, how to prepare and follow a budget, and how to handle credit.
- Safety – There’s nothing more important than personal safety. Unfortunately, people with disabilities can easily become victims of unscrupulous individuals. For this reason, people should be aware of their surroundings at all times. They should also know how to avoid providing too much information online, especially on social media. In the event a person lives alone, he or she should know how to call for emergency assistance, and when to seek medical attention.
- Everyday tasks – Being able to prepare food, dress, perform self-care rituals and keep house are often tasks that a young person learns in school or in a therapeutic setting. A person may have broad skills that allow him or her to perform these functions on their own, but in the event they can’t, it may affect what kind of living situation chosen by a person. What’s important is that these tasks are performed so a person can go out into the world with confidence.
- Access to transportation – To be able to get to work, school, activities and social occasions, a person must be able to operate a vehicle or secure transportation. Learning to drive can be a long process; parents can enroll a son or daughter in an appropriate program to help them master the skill before moving out. If a person cannot operate a vehicle; find housing located near transportation lines, or secure independent transport through non-profit or community agencies.
Why is it beneficial for a young adult to live independently?
A better question might be, why does anyone want to live independently?
The answer to that question is simple enough – all of us enjoy the ability to pursue our profession or work, spend time with friends, or engage in activities or hobbies without interference. It’s about autonomy and being in control of one’s life.
Those things are important for everyone, but to people with special needs, being able to express themselves, and live a life filled with enduring experiences is something that they fear they may never have. Therefore, they pull out all the stops when it comes to living independently.
Studies show that people with special needs that have a modicum of autonomy are happier than those that depend on family members for all of their needs. Some positive effects of living independently include:
- Increased sense of self-worth
- Better sense of economic security
- Soaring self-confidence
- Improved productivity
- Ability to socialize, make meaningful connections
What services and supports are available for maximizing a person’s independence?
If a person’s disability is one that means he or she will acquire assistance in specific matters, there are options available that are designed to enhance individualistic living.
There are non-profit groups, as well as government agencies, that will help people make choices about the scope of assistance required to live independently. These agencies can work with clients to develop a profile specific to his or her needs. That information is then used to help determine what services a person will need.
The types of services that can be coordinated include:
- Training in budget coordination
- Instructions on how to locate transportation
- Basic life skills and essential tasks
- Supportive services in which individuals will help with specific tasks
Centers for Independent Living, or CILs, also provide resources to a person seeking to increase his or her independence. CILs are publicly-funded non-profits that focus exclusively on the disability community. There are more than 3,000 CILs in the United States; all of them work towards the goal of increasing independence within the disability community.
Services offered by CILs include:
- Skills training
- Employment opportunities
- Emotional support
- Referral services