Transition to Adulthood: Home Modifications for Young Adults with Special Needs
Most parents become empty nesters at some point, when their kids grow up and move out on their own. But when a child has special needs, there’s a chance that time will never come. That doesn’t mean parents can’t give young adults with disabilities more independence. With some thoughtful modifications, it’s possible to turn your home into a multigenerational space that provides adult children the opportunity to do more for themselves, while keeping them under the same roof.
The Social Security Administration defines an adult child with a disability as someone who was disabled from birth or before age 22. This can include intellectual disabilities such as Down syndrome and autism, physical disabilities like cerebral palsy and muscular dystrophy, or myriad other conditions. Each adult child has a unique set of needs and abilities, but for the overwhelming majority, their diagnosis makes living independently difficult. Nearly 70 percent of adult children with disabilities continue to live under the care of their family, according to a recent Easterseals study.
As young people with disabilities transition to adulthood, families need tailored solutions that balance their need for independence with their ongoing care and safety. A blueprint (both literal and figurative) for your child’s future home may look very different from the house your child lives in today. Whether your home is big or small, your wallet is thick or slim, this guide will cover thoughtful living solutions for you and your loved one.
Please note: This guide offers comprehensive solutions for families who care for young adults with special needs; however, it shouldn’t replace the advice of a doctor or other medical professionals, such as an occupational therapist or builder/contractor.
The Who, What, & Where of Home Accessibility for Special Needs Adults
When considering home accessibility, follow the who, what, where planning model. The person with special needs and his or her unique challenges should be the primary concern, and everything else should follow.
WHO: Consider Your Child’s Individual Needs and Abilities
You know your child better than anyone, and only you can determine the thoughtful flourishes that will transform a space into something that is truly their own. The following will help you define form and function for your one-of-a-kind child. It’s as easy as PIE (physical, intellectual, emotional).
Physical special needs range from people who have an early-life special need, such as cerebral palsy, to people with late-childhood conditions related to accidents, such as an acquired spinal cord or brain injury. Further, people with loss of vision or hearing will have specific physical needs as well.
These disabilities often present mobility challenges in a home environment. When planning a home for your child who has physical disabilities, ask yourself the following:
- Will his or her abilities decrease or increase over time? An adaptable environment is crucial for those who may improve with physical therapy. An adaptable environment is also necessary for those who may need more accessibility modifications over time.
- Will he or she need alternative solutions for home exercise? Exercise is inclusive, and it’s an important part of healthy adulthood. Home exercise options may include something as complex as a swimming pool for aquatic therapy or as simple as a pull-up bar for upper-body workouts.
- Will he or she need safety devices that support independence? Autonomy for people with special needs may mean an increased need for supportive technology. Home security systems, cameras, and even emergency call buttons can go a long way in creating a sense of independence. These options should be considered carefully based on your child’s needs.
Intellectual special needs are on a spectrum and vary greatly even among specific conditions. Examples of intellectual disabilities include everything from autism and Asperger’s disorder to Down syndrome. Environmental elements, including sensory objects, can influence people with intellectual special needs.
When planning a home for your child who has intellectual disabilities, ask yourself the following:
- Is my son or daughter high- or low-functioning? This major detail is the cornerstone of living arrangements for nearly all adult children with disabilities, but it is particularly important to those with intellectual special needs, as some people may require far less parental supervision as they age.
- Can technology assist with independence? One family was able to create a functional solution for independent access to home entertainment by creating a QR code that automatically gave their child access to his favorite online content. In fact, QR codes are an incredible accessibility tool for people with special needs.
- Does my son or daughter have specific sensory needs? People with special sensory needs may have aesthetic and material concerns that change as they transition to adulthood. For example, independence for those with autism or Asperger’s may mean a custom-designed kitchenette or a designated area for relaxation.
Emotional special needs are inclusive of all circumstances and not just people with specific conditions, such as a psychiatric disorder. In fact, in some cases, depression can become a secondary condition. According to the Down’s Syndrome Association, “Depression is not part of the condition or inevitable, but it is one of the most frequently diagnosed mental health issues for those with Down’s syndrome.” This is why it’s important for one’s environment to emotionally support all people with special needs.
When planning a home for your child who has emotional disabilities or may develop them, ask yourself the following:
- Does the home provide safe access to the outdoors? Natural sunlight plays a major role in preventing depression. Easy access to a street-facing porch, for example, may also provide social interaction and reduce potential isolation. Safe outdoor access should be on your list for all adult children with special needs.
- Does my son or daughter have any triggers? Adult children with schizophrenia are at risk for substance abuse problems; under these circumstances, you may wish to keep an alcohol-free home as your child comes of age. Other examples of in-home triggers may include sounds from the street or neighbors, stressful family dynamics, or access to certain types of media outlets.
- Do you live in a city or rural area? Each of these architectural environments come with unique challenges for people with special emotional needs. Both come with their own risk of social isolation. Further, cities can overload the senses, whereas rural areas can come with an almost roaring quiet. Certain locations may also limit or increase access to mood-improving social programs.
WHAT: Think About the Space You Have to Work With
Working under the constraints of your budget may require creative thinking based on your current home and its space limitations. Below, you’ll find six common living situations and creative suggestions for adapting them to promote accessibility and a sense of independence.
- A Bedroom
- Add a couch. If the room is big enough, adding living room–style furniture can transform a space into a hangout-ready hideaway that allows extra seating in a still-private space.
- Designate amenities. If you have a second bathroom outside your child’s room, make it their own. It may be tempting to decorate the guest bathroom to match your decor, but designating this amenity as their own, along with its style, can offer a much-needed sense of ownership. Talk with your son or daughter about decorative elements they’d prefer in their adult bathroom. This activity should be a fun rite of passage that you and your child work on together. Other amenities may include a special area in the backyard or reserved cabinet space in a shared kitchen or fridge.
- Include dormitory-style items. A mini fridge, a microwave, a place to stash dried goods and snacks: These conveniences will offer autonomy and privacy for your adult child. The list of in-room appliances is endless. Table-top washing machines and modular storage are just a couple things Gizmodo recommends for the modern, utilitarian room. See the sections below for additional tips.
- A Bedroom With an Attached Bathroom
- Consider the list above. Decorative flourishes, designated additional amenities, and functional devices are still a must.
- Discuss hygiene routines. An adult child with special needs who has their own bathroom will take greater control over their daily hygiene. As autonomy increases, so does the chance of self-neglect. Freedom is an important part of adulthood, but people with special needs may require additional support and guidance when it comes to self-care.
- Rethink safety and accessibility. What worked for your adolescent may not work for your adult child. Adulthood and the need for independence may require extra accessibility support, especially in the beginning – when there’s a risk of attempting too much too soon. Doorways, tubs, and flooring may need an upgrade. See the sections below for additional tips.
- A Split Floor Plan With Two or More Rooms
- Consider configuration options. A split floor plan offers a great opportunity to provide a semi-independent living situation within your home. With two or more rooms, you can provide an apartment-like environment for a young adult who has access to the family kitchen.
- Discuss ways to use a secondary room. Talk to your child about his or her interests to determine the best use of a secondary room. This should be a special space that offers a break from the bedroom, a place for creativity, or a hangout area for guests.
- Add in-home intercoms. This tech ensures safety and communication without unnecessarily infringing on privacy. A quick check via an intercom call could provide more alone time and reduce the need for unwanted in-person interactions.
- An Attic, Basement, or Garage Conversion
- Understand permits for converted spaces. The need for home conversion permits will vary greatly based on the state in which you reside. In most cases, you will need to apply for a permit before you start construction – even if it’s for a standing unit that already exists within your home.
- Decide on appropriate monitoring. If you’re considering a converted space, your child likely has special needs that allow for considerable independence; however, safety is probably still a major concern. Means of monitoring range substantially. For some families, it could mean a closed-circuit surveillance system; for others, it may include a door that provides easy access to and from the main part of the house. Intercom systems also work well for converted attachments. Talk to your son or daughter about comfort levels versus safety and a compromise that gives peace of mind for both parties.
- An In-Law Suite or Guest House
- Consider easy access to and from the main house. If your child needs help in the middle of the night, consider all the ways he or she may need to reach you. This includes a safe path to the door of the main house that’s accessible even if you’re not around. You must plan for the “worst case scenario” in terms of home-to-home access, even if you don’t believe your child would attempt to leave their dwelling on their own.
- Mitigate the potential for isolation. If home is where the heart is, then make it clear your child is always welcome in the main house. Some adult children crave autonomy while others may feel they’re being banished. Consider keeping your child’s old room intact so that he or she knows they are welcome in their childhood home whenever it is comfortable for them.
- Explore programs that teach independence. Peer environments that review cooking, cleaning, and more will foster autonomy while teaching best safety practices to people with special needs. If you plan to have your child live in detached housing, starting early with home and life training is key.
- A Home Addition
- Embrace the “blank slate.” Work with a builder who has comprehensive experience with accessible housing. He or she can work with you to anticipate future challenges and functional solutions. If you have a sloped lot or uneven terrain, talk to an engineer about using backhoes and excavators to prepare the land.
- Beware of the tiny house. Tiny houses, detached from a main house, are tempting: They’re affordable, and they fit nicely in some backyards, but most prefab homes lack functional accessibility. Meaning: When they do offer accessibility, most are also one-size-fits-all solutions.
- Consider all the configurations. A home addition doesn’t have to be complex. Some families may benefit from an extra bedroom or bathroom; others may wish to go all-out by creating a secondary living space that’s attached to the main house but fully equipped with its own amenities (think: kitchenette). Don’t be discouraged if you can’t build a secondary dwelling, but do be thoughtful when it comes to alternatives. Who knows, one day you may be able to afford the add-on of your dreams – but it may cost less time and money if you don’t have to knock down an ill-conceived bathroom addition before building more.
WHERE: Is Renovating the Right Option?
Most empty-nesters, regardless of their child’s abilities, face the same future living questions: Stay and renovate, or move to a new home? Parents of adult children without special needs often look to downsize; whereas, parents of adult children with special needs often look to upsize or improve.
It may be time to move if your potential renovations will exceed your home’s equity. A number of factors can impact your home’s value, including your neighborhood and the size of your lot. For some, however, equity may work in their favor. According to Forbes, reverse mortgages and home lines of credit may be just the ticket to “aging in place.”
When these financing options aren’t possible, grants are another way to receive money for home renovations. For example, this Accessibility Modifications Program (AMP) may offer up to $15,000 for qualifying families. The resources section near the end of this guide will offer more solutions.
If you’ve exhausted all financing options for home renovations where you currently live, it may be time to explore new housing. The following action items will help you plan your accessibility-based rehoming:
- Consider multigenerational home construction. This trend refers to structures designed specifically for extended families who will share a home (e.g., grandparents living with their children and grandchildren). These dwellings are a perfect blueprint for special needs families as well.
- Choose good bones over aesthetic. A strong, well-designed structure is key. This will ensure your accessibility renovations stay at the top of your to-do list.
- Plan now, act ASAP. If you wait until your adult child’s 18th birthday, it might be too late. When it comes to housing market fluctuations, a decade makes a big difference. You may have been unprepared for a child with special needs when you bought your home, but you don’t have to be unprepared for an adult child with special needs.
Autonomy for a Young Adult With Special Needs
For an adult child with a disability, a successful transition into adulthood requires thoughtful and consistent communication. Ask your child about their goals for adulthood. Think about your own plans for their future and how they align with your son or daughter’s hopes and dreams. Is the objective broad (e.g., more responsibility and independence) or well-defined (e.g., obtain a job and start a family)?
Whatever plan you both decide on, encourage accountability and celebrate milestones – no matter how small.
Providing Household Access: Entrance and Exit
- Determine the need for privacy. A private entrance, or even a secondary entrance designated specifically for your child, will encourage him or her to come and go more freely.
- Opt for design “hacks” that promote independence. When a private or secondary entrance isn’t possible or safe, it’s time to get creative. Add flourishes on and near your child’s bedroom door, such as a faux apartment number from the hardware store, a door knocker, a mailslot or on-wall mailbox, a doorbell, and more.
- Provide a key. No matter the entry point, provide a key to a lockable door. If it’s not the door to your home, be sure you have a copy and discuss the reasons why you may need to enter your child’s room.
- Create a landing pad. Designate an area just inside the entrance to your child’s room and design a functional entryway. This is yet another upgrade that’ll make a room feel more sophisticated and apartment-like.
Setting Goals for Household Chores
- Skip the chore chart. Develop a grown-up system for tracking chores. A faux punch-clock area with a DIY timecard is one way to give tasks a job-like feel while tracking accountability.
- Consider the best flooring for “cleaning areas.” There’s no need to make a job harder than it needs to be. If you’re planning to renovate your home for accessibility, consider how flooring choices might impact daily household cleaning.
- Create a personalized cleaning kit. Install a special locker or closet with a vacuum and other cleaning supplies in or near your child’s room. Specialized access to cleaning items will provide a greater sense of ownership when it comes to chores.
Allowing Space for Personal Care
- Choose privacy when possible. A private bathroom boosts that apartment-like feel and provides privacy for your child’s potential guests as well.
- Fake it until you make it. Minor home renovations that feel like an en-suite bathroom can allow morning and bedtime privacy for self-care routines. Adding vanity fixtures to bedrooms, such as a mirror and sink, can have a big impact without the big bucks.
- Designate a special area in shared bathrooms. When “private” isn’t possible, get creative with the room you do have. Maximize vertical space. Include individual shelving or cabinets that distinguish your toiletries from your child’s. If your bathroom is big enough, consider installing a double-sink vanity.
- Include and discuss safety features. Stand-to-enter tubs and showers without curtains are ideal for someone with physical disabilities, as this makes them more accessible. A person with intellectual disabilities may require special knobs or adjustments on faucets that restrict water temperature to prevent burns. Developing a bathroom safety and care plan from an early age, like this one from Miss Jamie, O.T., will increase familiarity and confidence.
Introducing Food Preparation
- Designate food-related tasks based on comfort-level or ability. Some adult children will thrive by simply creating a meal plan for the week or choosing recipes from the internet. Others may desire the entire experience. Walk your child through the store-to-table process. Some points you may wish to cover:
- Food budgeting: Talk about a monthly plan.
- Meal planning: Explain how this impacts a budget.
- Personal nutrition and choosing a diet: Review the benefits of a balanced diet.
- Grocery store layouts: Explain fresh, frozen, canned, and dried goods.
- Employee interaction: Role-play various grocery store scenarios, such as asking for help finding a shopping-list item.
- Kitchen and food safety: Discuss what it means to fully cook something.
- Easy, everyday recipes: Review the value in preparing quick meals at home versus eating out.
- Create a prep area and command center. Organize everyday herbs and spices, common cooking utensils, and more into one easy-access area that’s just for your child. Purchase specialized items, such as a cooking apron, that will help create a ritual around cooking. Your command center could feature a list pad for grocery shopping as well as a dry-erase board for important reminders, and a weekly scheduling board for meal planning.
- Outfit a kitchenette with the right tools. If you have a kitchenette, you’re more than halfway to independence day. Now, you’ll need to decide on the features you’ll add, remove, or improve. It helps to first understand how your child will work in the kitchen (e.g., full meal prep versus simple sandwiches and snacks). Consider the following:
- Add automatic shut-off devices, fire extinguishers, and simple knobs and drawer pulls.
- Remove any unnecessary appliances, gadgets, or utensils that could cause confusion or injury.
- Improve appliances and gadgets by choosing smart devices, such as smoke detectors or refrigerators. At the very least, review your current appliances to ensure they’re ADA compliant.
- Add dorm-style conveniences. When a kitchenette isn’t possible, simple home “hacks” might be the answer. From a mini-fridge to a Keurig machine to utility carts for snacks, there are so many ways to upgrade a room. The following articles offer guidance on tweaks that can transform a bedroom into a “suite”:
Designating Work and Activity Areas
- Create a convertible storage table. These types of work-and-store multitaskers are great for everything from crafts to puzzles. Add wheels to the chair legs to make them even more functional.
- Soundproof a room. The sound of resentment is loud. Avoid tension by designating a space for no-fuss music making. This is especially important if music plays a therapeutic role in your child’s life.
- Turn a closet into an office. This is an incredible option for a young adult who may wish to pursue a work-from-home career under a roof where space is limited.
- Incorporate room dividers. In addition to traditional room dividers, curtains and freestanding bookshelves can visually organize a space into activity areas.
Designating Exercise or Therapy Areas
- Create a sensory retreat. Depending on your child’s special needs, a sensory retreat could be essential to their daily routine. Weighted blankets, light projectors, therapeutic swings … these are just a few favorite things for many people with autism.
- Assemble a mini gym. A treadmill or exercise bike is great, but they might not be appropriate for all individuals. Weight sets, exercise bands, weighted balls, balance beams, ballet barres, yoga mats, hula hoops, and foam bricks are all ways to build a mini gym that may encourage regular workouts.
- Designate a meditation space. Pillows, blankets, mats, and relaxing essential oils will set the mood.
Encouraging In-Home Socialization
- Consider convertible social areas. Thoughtfully plan spaces that break away or transform. Foldable furniture, couches with storage, and items that roll are all ways to quickly convert a room for guests and family activities.
- Choose multitasking bedroom configurations. If it isn’t possible to give your child a designated living room, plan special social areas under a loft bed or add a window bench for activity storage and additional seating.
- Plan for romantic partners. Love is a human drive, regardless of ability. Many adult children with special needs may date or even marry. Talk to your child early and often about potential romantic partners and realistic arrangements. Discuss what dating will look like under your roof; purchase convertible furniture, such as couch-beds for sleepover dates; explore multigenerational living options that allow your family to grow organically under one roof.
Balancing Safety and Independence
Independence and safety go hand and hand for adult children with special needs. Developing a safety plan for your child is the cornerstone of all independent living situations. In fact, you may already have one in place for your adolescent. With some guidance and modifications, you can carry this plan into adulthood.
Whether your adult child with special needs is living in your home or at a safe distance, you’ll likely want to establish boundaries and install devices that support them.
The next steps:
- Secure the areas that are off limits. Fix security locks to sheds or closets with dangerous objects of hazardous materials. Create physical boundaries outdoors with fences; indoors, use adult-size special needs gates that limit access to stairways.
- Heighten your senses. Door chimes and motion lights are just two ways you can increase your awareness of your child’s comings and goings. Invisible fences that detect motion and provide text or email alerts are another, less-invasive way of tracking activity. They’re also a much-needed alternative for adults with sensory-specific needs.
- Protect your home. Adults with special needs are vulnerable to crime. Home security systems are a common way to keep the bad guys out, but they don’t assist in education regarding risky visitors. In addition to creating a plan for answering the door, consider purchasing a doorbell with a live video view. These types of systems will allow your son or daughter to safely communicate with an outsider. Once installed, use the device to roleplay potential scenarios and determine when (if ever) it’s OK to answer the door for a stranger.
Certain conditions come with an added need for medical technology – especially as an adult with a disability ages into a self-care routine. Other medical alert devices can assist even the highest-functioning adult with special needs or, at the very least, provide parental peace of mind.
The next steps:
- Contact your insurance provider. Before purchasing any equipment, ask your provider for a list of qualifying medical equipment and the steps you must take to ensure eligibility. Generally, a doctor must write a prescription for the device to qualify.
- Consider biofeedback devices. The device could be as ubiquitous as a smartwatch or as mundane as a blood pressure cuff. It’s the bells and whistles that matter. Look for devices that not only measure stats but provide remote notifications (e.g., text messages) or historic trends (e.g., comparisons of weekly, monthly, and yearly blood pressure readings).
- Obtain an emergency alert system. Everything, from a wearable device to special buttons you can place room to room, counts. The Amazon Echo App “Ask My Buddy” might be another alternative if you wish to avoid the costly subscriptions associated with most emergency alert devices. The specific device, or devices, you choose will largely depend on your child’s living situation and level of independence.
Injury prevention has everything to do with the layout of your home and its specific amenities. Planning for adulthood may mean rethinking accessibility. Right now, you may assist your child with his or her everyday routine. In the future, you’ll need a plan that allows your child to safely and independently perform tasks without risk.
The next steps:
- Look for a one-story home. You can also configure or renovate your current living arrangements for unassisted access to places like the kitchen or common living spaces.
- Assess “fall zones.” Stairways, bathtubs, beds: All of these everyday access points present fall risks. As your child becomes a teenager or young adult, start by providing more independent access to these areas under close observation. Notice specific challenges related to balance, as this is a key factor in a fall prevention.
- Enlist a physical therapist. Medically supervised programs that target movement can help teach your child to move independently as they grow. According to Easterseals, a physical therapy program can include safety and prevention strategies.
- Make a map of “hot zones.” Design a custom, hand-drawn map of your home and color-code it to show your child risky areas. (You don’t need to be an artist; simple is best.) Highlight areas where he or she has complete independence and distinguish them from the “hot zones,” which may require parental assistance. Similar to a fire safety escape plan, you should also highlight entry and exit points.
Your Plan-Ahead Checklist for an Adult Child With Special Needs
- Listen to your adult child. Let him or her participate in their future. It’s important to focus on home accessibility and autonomy, but it’s equally important to honor hopes and dreams. Your child’s wishful career or creative pursuit may help you understand the housing modifications he or she will need.
- Review local programs for adults with disabilities. Adulthood comes with a range of new responsibilities from choosing a career to making a home. Here are a few programs that foster a sense of purpose and independence for young adults with special needs:
- Consider your location. Make a pros and cons list of the way your current town or city will impact your child’s access to key programs and services.
- Stay informed about future challenges. Talk with your child’s doctor about the ways his or her condition will impact them into adulthood. Will his or her circumstances improve or deteriorate over time? What specific challenges come with these changes?
- Build a must-have home features list. These items may include:
- A bathroom addition or vanity area
- A sitting or hangout area
- A food preparation area
- A desk or workspace
- A therapy or exercise area
- An outdoor area
- A private entry
- Determine your budget. Review this last as it will help you observe the bigger picture without being too exclusive. Planning this way ensures you’ll give equal weight to both the emotional and physical challenges to come.
Resources for Parents of Adult Children With Special Needs
Your child’s future is as unique as his or her personality and abilities. One’s home and life plan should account for these dynamics. Accessibility isn’t a one-size-fits-all solution and neither is your child’s future.
Whether your adult child with special needs is one of the 20 million who is unable to move about freely in his or her own home or one of the 14 million who will need assistance completing everyday tasks and errands (Pew Research), he or she will likely need tailored solutions that support independence.
The best way to ensure success for your child is to explore support that will help both of you achieve the goals you set for the future.
Financial Support Resources:
- Benefits Planner: Disability
- Supplemental Nutrition Assistance Program
- GrantWatch Disability Grants
- Disability Scholarships (Education)
- HUD Vouchers for People With Disabilities
- Habitat for Humanity Application
- Temporary Assistance for Needy Families (TANF)
- Autism Speaks Special Needs Financial Planner App
Emotional Support Resources (Parents):
- Empathy for Parents of Special Needs Children: Coping & Help
- Targeted Interventions Supporting Parents of Children with Special Needs
- Online Forums Are A Lifeline For Isolated Parents Of Disabled Children
- FND Parent to Parent
- Special Needs Moms for Moms
- NAMI Family Support Group
Additional Articles and Resources:
- Maximize Your Disabled Child’s Government Aid
- Benefits.gov Resource List
- Ways To Provide For Your Disabled Adult Child’s Future
- Create a Plan for an Adult Child With Disabilities
- 10 Special Needs Organizations You Should Know About
- Paying For My Special-Needs Child
- Special Needs Care for Adult Children: Your Care Options