School ends and then....
It is time to begin exploring the options for your child once school has ended. Residential and vocational services may or may not be fully provided by your state’s programs. It is important to focus on the cash flow to fund the supplemental needs not covered by public resources or services, such as transportation, special health and hygiene requirements, recreation, advocacy, or special foods and therapies. In many cases, residential placement and transportation is limited.
Today, primarily due to lack of public funding and a desire for greater control, parents are seeking alternatives to relying upon the government to provide full residential supports. By utilizing both public resources and their personal income and savings, many families are developing creative residential models focused on quality and care.
Begin with an assessment.
Take a proactive approach to exploring residential programs and day/vocational programs by interviewing several provider agencies in your area. The most appropriate government agency for your child will usually provide an assessment to determine their requirements as they make the transition to adulthood. In some cases, this assessment is thorough, and you will feel good about it. In other cases, you may question the accuracy or perhaps the thoroughness or the competency of the assessor, or possibly the general disposition of your child at the time of the assessment.
You may want to hire an expert to help. Although residential supports or a day program may not be an entitlement benefit, it is important for you to make sure that you are receiving the most appropriate supports and services for your child. Having an independent consultant who is aware of the various programs and options available will enable you to design the best life possible for your child. The more knowledge you have about how the system works and the various agencies and models available, the more power you will have in making these decisions when the time comes.
Choosing a housing option.The best housing option is the one that makes your child happy, safe, and secure. Planning for a home for your child with a disability will require a change from the traditional thinking about a home's curb appeal. The view of the street from the house is as important as the view of the house from the street!
- Who are the neighbors?
- Is it a safe, warm, and accepting community?
- Is the property located near transportation?
- Is it within walking distance of any interesting places?
- Is it accessible for support staff, without being conspicuous as a home for people with disabilities that might look out of place within the neighborhood?
A lot of thought, research, preparations, and planning will go into this decision. Analyze each option by applying the outcomes of your child’s assessments and/or the PCP, and then determine how the staffing or supports of each option will work for your child. This will help you look at which option is best for you to consider.
There are many variations of housing options but here are three of the more common choices. The focus is not about the physical home but about the amount and type of support your child will need within their living situation.
Your child lives independently or semi-independently, alone or with another individual. In some states or among certain disability groups, supported housing may be the term used.
An individual or family lives with your child to provide support, with the goal of sharing lives. The home can be purchased or rented by you or your child, or purchased or rented by the family or other individual providing the supports.
This term refers to what is now commonly thought of as group homes, staffed apartments, and so on. Three or more people live together in a house or apartment, and staff work in various shifts to support their lives.
When your child lives under your roof, you assume all the fixed and variable household expenses and may provide both direct and indirect care.
A checklist can help.The planning process may seem overwhelming. The Special Needs Housing Checklist is not exhaustive but designed to serve as a guide to get you started in the planning process.
Housing and Transition Planning Stories
When our daughter Briana was 16 years old, we were invited to an open house of a home for individuals with disabilities. We initially did not think that we would benefit by attending because Briana was only 16, and we never envisioned her living outside our home. We were amazed to see that residents who had even more challenges than Briana were able to live on their own. It was a great experience to see how happy the residents were. Our views on Briana’s abilities and living options definitely changed.
My son is now 27; when he was 22, I was not ready for him to move out of our house. His brothers and sisters were at home, so he was part of the crowd when all their friends were at our house. When Steven was younger, and even up until he was 22, we envisioned that he, too, would like to live in his own house or apartment. However, that has changed because, at least up until now, we have not found the right situation for him. Now, the other children have been out of the house for more than 10 years, and we feel we need help. We are tired and could use a break. When we were planning for our retirement years, we never planned to have to pay for his quality of life as well as our own. I wish that we had planned better.
When my parents died 3 years ago, my sister needed limited supports and was happy living in a residence with two roommates. For years, things were going very smoothly, and her supplemental expenses were very low. In fact, the only additional expenses she had were from her hobby of collecting hats—which she loved to do. When one roommate suddenly became ill and passed away, Brooke went into a period of depression. Because Brooke’s communication skills were limited, it was very difficult to detect how great the emotional distress was for her. She then had multiple hospitalizations for depression. But due to insurance regulations, she could not stay in the hospital for any extended length of time. This resulted in our having to change her living situation because she now needed 24-hour supervision. Although our state provided for Brooke’s residential placement, it became a challenge to be able to maintain her original living situation. We had to hire a disability consultant to help us obtain the additional services Brooke needed. Fortunately, the money my parents left in her SNT was available for us to use to hire the consultant. We developed a plan that involved our paying for a graduate student who was studying to be a social worker to be with my sister, to give her the supplemental supports that we felt she needed. Although the state was willing to provide for her basic needs, we felt that we should do better than that for her.
Determining levels of support needed
If individuals are not able to be safe on their own, do not have the self-initiative to eat on a regular schedule, need medical support, or are not able to tend to their personal hygiene needs, it is highly likely that they will need to have someone to support them at all times, commonly known as 24/7 supports. Depending on the housing option, this can cost a lot of money. However, there are many creative ways to reduce the overall costs.
Alternatively, you may review the list below and find that your child needs only little or no supports to be safe, does not need prompting to begin and end the day on their own, or does not require much assistance in these areas. If so, they likely will need limited supports, commonly known as individual supports or independent supports. These levels of support needs may not require a lot of money to implement.
Consider your child’s needs in the following areas. By no means is this an exhaustive and all-inclusive list. Hopefully, it will help you to think about the necessary supports in different areas and about your child’s skill levels.
If your child was injured or had a cut that would not stop bleeding, would they know what to do? If they had a fall, would they be able to get up or know what to do to seek help? Are they able to self-medicate, or do they need constant supervision and prompting? What other concerns do you have about their ability to respond to a personal or health emergency situation?
If there were a power failure, would your child be able to find safety? Are they able to lock and unlock the doors? Would they be aware if the heat was turned off? Are they able to answer the phone properly and take messages? Would they know how to seek help for themselves? Do you have other concerns for their safety in the home?
Does your child maintain relationships with many people? Will they initiate or participate in conversations? Do they have friends? Do they have hobbies and other interests? Are their behaviors consistent and appropriate in
public? Are they able to manage their own time and/or daily schedule? Do they enjoy being with others? What are your concerns for their social needs?
After you have considered the above questions, work with various agencies or professionals who have experience with running each housing option. Anticipate speaking to many different agencies as you search for the best fit.
After you have identified your child’s level of support needs, you will be in a better position to consider the most appropriate housing option for them. Your next step will be to look at the costs associated to support this option.
Estimating the expenses associated with each housing option will involve many factors including:
- Discretionary spending (fun)
A process for decision-making.
In planning a life for a family that includes a member with special needs we work from the final vision backward. We start with the vision of where your child will live, identify the needs to support this vision, quantify the needs, and then identify resources both public and personal. When we determine the needs of the individual and lay out the costs of each option, we can determine the best financial approach to take.
Because personal decisions often are made based on what things cost, this process can also be followed in planning for your child. Identify the ideal situation, and then prioritize. Think about what an absolute necessity in your child’s life is—things that are non-negotiable. Identify what you would like your child’s life to look like and what things are part of that vision, but which may not be absolutely necessary. And then think of those supplemental things that are negotiable. Once you have an idea of these expenses, you can begin to develop a sense of how much money you will need.
Additional articles about housing and transition
The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child’s Life by Cynthia R. Haddad and John W. Nadworny Copyright © 2021 by Paul H. Brookes Publishing Co., Inc. All rights reserved.
Moving Out: A Family Guide to Residential Planning for Adults with Disabilities (Krouk-Gordon & Jackins, 2013).
Affinia Financial Group conducts business under the Special Needs Financial Planning name. Advisory services offered through Affinia Financial Group, LLC, a registered investment advisor.
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