Every young child with autism will become an adolescent with autism and an adult with autism. As your child ages, you are likely thinking about what the future holds and what potential outcomes there are for your child. As autism is a spectrum, some young adults may be self-sufficient enough to live independently, while others may need a little more help.
Residential programs for autism may give your adolescent or adult with autism the ability to be self-sufficient, just with a little more guidance. You may also have a loved one with autism that needs a higher level of care than you’re able to provide. You may be thinking about transitioning to a residential program for autism when your child is younger, or this may be something you’re considering as they enter adolescence. Either way, it’s important to properly prepare for this event so that it’s easiest for your loved one. Read on to learn more about how to smoothly transition from home to a residential program for autism and how to prepare both yourself and your child.
Making the Decision to Transition
When your child is young, the immediate path typically follows the same pattern. If your child is not yet of school age, you’ve likely been told to search for early intervention programs, such as applied behavior analysis (ABA) therapy, and other therapies, such as occupational therapy (OT), physical therapy (PT), and speech therapy (ST). When your child is of school age, it’s anticipated they will either attend public school, be outplaced to a private school that better meets their needs, or you may make the decision to homeschool, while still providing them services such as ABA therapy.
As your child begins puberty and is of middle school age, you may seriously start to think about what the future holds for your child. Will they be able to live independently? Will they be self-sufficient? There is also the question no one likes to think about, but it must be addressed—what will your adult child’s life look like once you are gone?
These can be overwhelming and even agonizing thoughts and questions to consider. You’ve likely already spent years advocating for your child and searching for services that can help prepare for the future, but planning for the actual transition can be stressful and a bit daunting.
Positivity is important here as you make this decision. Think about all of the goals your child has met and the strides they’ve made over the years. The path to adulthood is difficult for any parent and child, but it can be especially tough on parents who have children with autism. Just as every child with autism is different, their path to adulthood will be individualized as well. There are many options to consider along the way—independence, post-secondary education, residential programs for autism, and supportive housing, among others.
One of the most imperative things you can do as you think about options for the future is to involve your child. No matter where they fall on the autism spectrum, they should be aware of their autism. Even if your child is non-verbal, they still have a great understanding of many things. So, this is a talk you need to have with your child as they grow.
Part of the reason is—you’ve been their advocate for their entire life. You’ve probably attended endless IEP meetings, and parent-teacher conferences—perhaps you even had to hire an advocate or lawyer to take things to the next level. As your child grows, they need to have a sense of self-advocacy. Whether they are independent or are making the transition to a residential program for autism, self-advocacy will play a vital role. Non-verbal children and young adults often can communicate well without the use of vocal language, so it’s still important to involve them in the discussion and decision-making process. You may even want to sit down with your child as young as 12 or 13 to begin talking about the transition process.
It’s never too early to begin promoting self-advocacy for your child. But, what does that really mean? Autism Speaks describes self-advocacy as “speaking up for yourself, asking for what you need, negotiating for yourself, knowing your rights and responsibilities, and using the resources that are available to you.” You have likely been your child’s loudest and most effective advocate, but it’s always a good time to talk to your child about speaking up for themselves and knowing their rights. As they grow into an adolescent and adult, these skills are of high importance.
The Importance of Preparation and ABA Therapy
Transitioning to a residential program for autism may not be on your mind when your child is young. Even before the thought crosses your mind, one thing that is wise to think about is preparing your child for the future, no matter what it may hold. If your child has an autism diagnosis and they are not yet of school age, early intervention is key.
Applied behavior analysis (ABA) covers a lot of bases and helps your child with many different skills. Studies have shown that early intervention with ABA therapy gives your child a chance of a better outcome later in life, so ideally, you should begin services as soon as possible.
ABA therapy is much more than behavior modification; it is an evidence-based practice that focuses on behavior and learning. However, ABA also promotes and teaches your child life skills and independence to prepare them for adolescence and adulthood. Your board-certified behavior analyst (BCBA) and registered behavior technician (RBT) will help your child with self-care and functional life skills. Some of these may include:
- How to dress without help
- Showering and bathing independently
- Using the restroom independently
- Brushing teeth; shaving
- Taking care of the house
- Making the bed
- Washing, folding, and putting away laundry
- Washing dishes
- Vacuuming and sweeping
- Cooking independently
- In the community
- Shopping for groceries
- Understanding appropriateness and safety
- Holding and using a bank account or card
- Using public transportation
Over time, these skills may be part of your child’s individualized plan, so when the time comes, your now-adult child has gathered many important skills to foster their independence.
Planning with Your Child
An integral part of the transition will be making the plan with your child. While you may be used to being their advocate, your child’s desires and wants need to be a top consideration. It’s important to ask your adolescent what their hopes and dreams are and what they would like to accomplish. There is a tool known as Planning Alternative Tomorrows with Hope (PATH) that can help a whole family come together to form the right plan for transitioning. Making an action plan is important. You should understand your child’s strengths and abilities, what their needs and likes are, and essentially who they are as a person. From here, while collaborating with your child, you can form an action plan of transition. There are several different types of residential autism facilities to choose from and your child’s wishes should be included.
The Individuals with Disabilities Education Act (IDEA) begins when a child is of preschool age (3) and continues until they are 21 years of age. This is important to remember, as IDEA covers your child past high school. There will be a final IEP meeting specifically aimed at transitioning at the end of high school. Most likely, your child will be at this meeting as well, which is where self-advocacy comes into play if they are able. This IEP process must provide a reasonable transition plan for your child. Section 300.43 of IDEA states that: “[it is] designed to be within a results-oriented process that is focused on improving the academic and functional achievement of the child to facilitate the child’s movement from school to post-school activities.” Many options fall under this umbrella, including:
- Adult services (residential facilities)
- Postsecondary education
- Independent living
- Vocational education
- Supported employment
Remember that IDEA is in place until your child turns 21. The school must work with you and your family to find a reasonable and comfortable solution for your child once they’ve graduated high school.
The final IEP transition meeting will likely include team members from previous meetings, such as those your child works closely with (teacher, speech therapist, etc.) as well as administrators who are part of the meeting. Your child will be asked to take part in the meeting, although they can contribute as little or as much as they wish about their future ideas. Likely, the most difficult part of the meeting may be the discussion concerning housing and residential facilities for autism.
Early Planning for Transition: What to Consider
As young as age 12, your child can be given what is called a Community-based Skills Assessment (CSA). Because no two people with autism are alike, this assessment helps parents, educators, and social workers assess functional life skills. You can continue to assess through adolescence, and this assessment can help in transitioning so your child gets the right placement.
Well before the last IEP meeting, there are many questions to consider if you believe a residential program for autism is the best fit. There are different community-based residential service options, so you want to think about a few things before you decide on one. Some questions you should ask yourself include:
- Where would my child thrive and be happiest?
- What specific training does the staff have?
- What is the policy for seclusions and restraints?
- How close and accessible are the local community and public transportation?
- What is the daily schedule (including weekends)?
- Where would your child be most safe and comfortable?
- What does transportation look like, and what training does the driver receive(i.e., are they trained to work with adults with autism)?
- Is there medical staff on site, and what happens in the event of a medical emergency?
There are likely more questions that are more specific to your needs, but that is a baseline of what you should ask potential residential housing providers. Also, always ask for a tour of the facility with your child. There is also funding and insurance to consider, which will be discussed separately.
There are also several types of residential programs for autism, and you may find an organization that provides several. The most common types of available options are:
- Group home living. This is the most common type of residential facility for a person with autism. In a group home, the staff is present 24 hours a day, 7 days a week. Many of those in a group home also have intellectual disabilities (ID) comorbid with their autism and need extra help. Group homes often have a small population, with eight or fewer residents. Skills are still taught and practiced in group homes, particularly how to be involved in the community, self-care skills, and independent living skills. A group home is run by a provider agency.
- Group home co-op. This is very similar to a group home when it comes to round-the-clock staff, setup, and services provided, but instead of the home being run by a provider agency, it is run by private individuals (often families or friends) that have signed a cooperative agreement. Sometimes co-ops do contract with outside agencies to bring the proper services into the home.
- Supervised living. This is also often referred to as semi-independent living. The individual may live alone, with a roommate, or with a group. Staff is available 24 hours a day for assistance, however, unlike a group home, they are not onsite all of the time. This type of placement can provide intensive supports and supervision to ensure the individual with autism can perform daily life skills and activities out in the community (such as grocery shopping). Several people living together may require different supports, so they will have their own caseworkers, social workers, and other support staff.
- Supported living. There is very little supervision or intervention needed in supported living. This is best for the individual that can live independently. The adult with autism will still have services and supports in place should they need them, but in most cases, those in supported living are adept at self-care, and community involvement, and may hold a part- or full-time job.
Funding Options for Residential Programs for Autism
Funding options may certainly be a concern when it comes to placing your child. While they are young, it may be well worth it to look into a special needs trust or an ABLE account, both of which a financial advisor can help you set up. Both are different with different sets of “rules,” but both can be used if you plan to self-fund your child’s placement in the facility. You should also consider applying for Supplemental Security Income (SSI) and Supplemental Security Disability Income (SSDI) after your child’s diagnosis. The income can be used to help with needs as your child grows, or sometimes it can be placed in a trust. If your child qualifies for SSI, they automatically qualify for Medicaid. If you do not receive SSI, you should apply for Medicaid in your state.
You can also self-fund residential programs for autism with:
- Your income
- Individual Development Accounts (IDAs)
- Tax credits
- Community Development Financial Institutions (CDFI)
- Banks or credit unions
- Private insurance
- Pooled trusts
In many cases, however, self-funding just isn’t possible for families. There are other options out there that can help cover some or all of the cost of residential facilities for autism. Keep in mind that each state varies, so it’s best to talk to your social worker or look up the specific laws in your state. In many cases, Medicaid will pay for residential care. It depends on each individual case, but if you are unable to self-fun, this is the first place to look. Remember, if your child qualifies for SSI, they are automatically qualified for Medicaid.
HUD Section 8 also provides housing to those with disabilities in most states via HUD Section 911 Housing Choice Vouchers (HCV). Once an individual receives a voucher, they have a certain amount of time to choose their housing, which Section 8 pays for. However, it’s important to note not all residential facilities will accept Section 8 vouchers.
Community Development Block Grants (CDBG) are grants that you can apply for so that your family can choose the residential facility of their choice. You may also want to look for other grants or scholarships in your community that may be used toward housing.
One last thing to keep in mind: especially in a group home setting, there are only a small amount of residents. Waiting lists for any type of residential facility for autism are exceedingly long. Some can take years. Waiting lists for funding are long as well—it can take years to receive a Section 8 voucher in some cases.
While this is a hard thing to think about, the best thing to do is to make an action plan early on in your child’s adolescence and begin to place their name on waiting lists. It’s also wise to contact a financial advisor (preferably one familiar with special needs trusts) to help guide you through some of the intricacies of trusts and ABLE accounts so that the transition from home to a residential facility for autism is as smooth as possible.