Begin with the End in Mind
Stephen Covey, the internationally recognized author of numerous publications advising leaders in the business world, government and those interested in personal development, is often credited with building around his famous introduction to planning. That advice was, “Begin with the end in mind.” A less famous advisor the Cheshire Cat told Alice, “If you don’t know where you are going, then any way will get you there!”
Given the trauma most families experience when told their child has a significant, lifelong disability and their lack of familiarity with the support available to them, it is not surprising that many parents feel overwhelmed with their situation and have little energy to do much other than worry about the future of their child and family within their immediate world. Those to whom the family turns to for guidance often spend their careers focusing on the early lifespans of these children and their struggling parents. They often know little about future supports and outcomes, other than to hope there is one that will still be viable when their young client reaches adulthood.
The legendary Napoleon Bonaparte taught his peers and adversaries two realities about planning: First, he said hope is never a plan and second, no plan survives as is, once it must actually be implemented. In light of these realities, planning to “The End” of finding that safe and secure place for their loved one is very complex. Certainly, by the time it becomes obvious they need to help their loved ones experience adulthood, these issues are often top of mind.
Planning for the future of virtually all children begins shortly after conception. As the unexpected diagnosis of serious, permanent, and life-impacting disability is revealed, families are placed in the position of having to alter their early plans. Faced with this new need to revise, families are often at a loss because this new information places them outside their realm of personal and family experience, so these families turn to others for help. At this point the family must confront their first reality that while there have been many other children born with disability, the experience of other families may not translate 100% to their own family’s needs. They soon learn their child is unique. They are like no other in multiple areas, including their biology, their family structure, their cultural heritage, their supportive or non-supportive environments, etc.
Most families learned, long before the modern human service world discovered person centered planning, their child was unique and therefore needed customized help to succeed and thrive in their world. As children age in reality, they become even more unique and again only their families and loved ones who spend almost all of their time with them are aware of those subtle, but important, changes critical to inform planning that will result in the best life possible. Therefore, we offer some general advice to those who are intimately involved in planning for a safe and secure future for children with significant disabilities.
Planning for the future is best done by the person with a disability and their family, with the assistance of an experienced facilitator of that process. There are numerous tools that have been developed over the last fifty years that have made this planning process easier and more likely to be successful. The guiding principle of all these planning tools is the same. They seek to discover and amplify what is important to that individual. Many times, people put off this kind of planning until someone has reached adulthood, thinking that at that point those individuals with disabilities will be able to more easily identify those goals. Waiting twenty years or more before engaging in serious planning for the future makes that planning process more difficult, however.
Most of us develop those vital personal and social skills to manage ourselves and our interactions with others during childhood. We learn by interacting with our peers. For children with disabilities it is vitally important that those interactions be with role models without disabilities. Remember “All I really need to know I learned in kindergarten”? It really is true that those formative lessons from both friends and teachers may take longer than one year for children with IDD. However, the learning continues as children with disabilities learn, work. and play alongside the their typical classmates. Absent those role models, many children with disabilities may actually become more dependent what could be called disabling help. Twenty or thirty years of disabling help will poorly prepare an individual for self-determination and the ability to fit in with roommates, significant others or their neighbors. This could limit housing and living options in the future.
Most adults report having lived in an average of seven different places throughout their life. When people talk about adults with disabilities living adult lives, they often imagine that these individuals will probably live in this new location for the remainder of their lives. This kind of thinking limits creativity in finding good housing solutions. Solving that big housing problem is more like the legendary person who ate the elephant one bite at a time. There are many places to live; there are many different kinds of places to live. Assume you will find the right one the first time and you may actually limit creativity or, worse, may lock someone into a very undesirable and potentially harmful place for a long time. Therefore, it is better to view planning for housing for an individual with a disability as one would view this problem for anyone else. If the first place turns out to be a great place, “Hooray!” If it does not, then let’s move! Sometimes a great place changes into not such a great place, depending on the neighbors who move in or move out or the landlord who changes.
Now in the age of self-determination when we speak about housing options, we are also speaking about who controls the housing in which people live. Previously, people with disabilities lived in housing units, whether they were homes or apartments for individuals or groups, that were owned by those who provided them support and services. If something failed in either the housing or the service provision, the individual often lost BOTH.
Today people with disabilities are seeking more direct control over their housing choices and are, therefore, renting or even owning where they live. In either case they control that living space. They often acquire needed supports from a variety of different agencies. This kind of service provision model puts more control into the hands of the individual with a disability. It also assures that their housing is more stable and secure in the eventuality that the provider agency ceases to operate or if the individual selects a different agency to replace all or part of what a previous agency was providing. When people were originally liberated from institutional living, there were organizations that offered as many services as possible in one universal service package. Today there are many more provider organizations, some who still offer virtually a birth to death service package and others who offer customized, boutique type services. With the expansion of service opportunities individuals and families now have an expansion in freedom and are more able to live person-centered, self-determined lives.
If the desired outcome is supportive living in an inclusive community, preparation for that is best started with supported play and learning in an inclusive, neighborhood, elementary school. Attending an inclusive school community brings children with disabilities into long term direct contact with potential future friends, roommates and neighbors who can make living in their home communities much more amenable. The availability of natural, freely-given support makes community membership much more likely for people with disabilities. When community life is possible only by paid caregivers, natural supports become more difficult and less frequent.
Barriers can limit options for housing individuals with disabilities. Some are physical and behavioral challenges resulting from their disability. Some are the consequence of concerns for safety and protection. Some are the lack of external support either from technology or from caregiving personnel. Some are the result of inadequate support because of fiscal budgetary issues.
While children are living at home, families do their best to help their children learn as many skills as possible, whether they are activities of daily living (ADLs) or instrumental ADLs. One such skill would be to prepare the child for sleeping away from home. For example, there may be a parent child campout with the cub scout troop or a sleepover at a favorite cousin’s home. Ultimately, the family discovers the amount of support needed and may seek some help in acquiring external sources of support. Part of any planning for the future, especially as it relates to housing, needs to include systematic exploration of the needs and the support that will address those needs to assure safety and security.
In the past decade, many have resorted to identifying technological supports to see how much human support can be reduced or even eliminated. This is especially true with devices that keep people from wandering from their apartments, especially at night. Other help for individuals who may experience anxiety can be addressed by communication and intermittent support as needed. Typically, this kind of technological support is very cost-effective and empowering and is frequently provided by government support programs. Again, it is better for individuals to learn about this technology and explore its use, while living in a safe environment still at home. That way, family can oversee its implementation and troubleshoot issues as they arise without placing anyone in jeopardy.
Families should help their children explore their communities and develop relationships with neighbors, classmates and people from other shared settings. They can compliment particular features of homes and yards, share an edible treat, note signs of new babies or graduations and offer congratulations. Such positive outreach will reveal who is responsive enough to work on building additional connections with. Mutual reciprocation over time can indicate who is safe and who has the potential for an authentic friendship. Then, like all true friends, they may be willing to assist for an unexpected event and even initiate occasional interactions. This open person can then be invited into an ongoing network of support for your loved one. For example, one backyard neighbor got the family’s permission to install a gate in the bordering fence, so the child with the disability could drop in more easily for snacks or rides with the friends.
Until the recent past, discussions about where teens would ultimately live were rarely held in transition meetings where job exploration and travel training to support that were the focus. If the family raised the question about their loved one’s exit to out of home living, they were often told, “There are residential options available, and we will connect you with those resources when you need them.” Believing this promise often slows down the family’s preparation for independent or interdependent living in the important years preceding the implementation of that major life-goal. But many families were blind-sided by a sudden drop in available housing stock or the failure to anticipate the 3-10 year waiting list for subsidized housing. Families and their youth with developmental disabilities should be encouraged to explore, question, and start creating a plan as early as age fourteen.
The introduction of Auxiliary Dwelling Units (ADUs) into the collection of options available for alternative housing has opened up significant opportunities for families. The construction of an ADU on the site of the family home provides an opportunity to create a transitional housing experience near or even contiguous to the family. This kind of housing can become a training site launch pad for future, more independent kinds of living. ADUs offer all the amenities of separate living, all the familiar comfort of family support, and all the opportunities for paid caregiving support, thus helping the individual with a disability become accustomed to receiving their support from different people and in different ways. Depending on the individual, their own place makes it possible for them to master as many skills as feasible to help them live on their own. The ADU also provides a safe space to return to the family when other housing changes result in the need to move out of wherever that individual had been living. So often parents talk about fear of their child “stepping off the cliff.” In the initial case of an ADU, they are just naturally transitioning in a way that provides protection and security for all as part of that natural process of adults moving out on their own.
There are two general strategies regarding safety that should be worked on while children are still living at home. At the first level, families need to think about maximizing the self-determination and self-protection skills that their children should acquire through experience in supportive learning environments. This kind of learning occurs inside and outside the home and occurs best in the company of others without disabilities who are good role models. It involves spending as much time as possible with nondisabled peers in a variety of normal and natural environments and equips individuals with disabilities with those tools that they will need to apply in their own lives. Secondly, some real-life learning and teaching needs to occur to address those specific concerns, like what to do in an emergency situation, how to react to an accident, and how to react to a health crisis that requires external attention because it is not easily self-administered. Things become critical such as how to contact emergency medical services through 911 and what to bring to the Emergency Department and what to expect if taken to hospital by ambulance. Their self-confidence in their ability to solve minor problems allows people to live in their own home environment without constant fear. The other approach is to assure that with good planning most serious emergencies are anticipated, and some kind of technological external support is equipped within the living environment. Fortunately, most modern apartments are.
One danger that should always be considered in thinking about housing is fire. Alarms, fire suppression equipment, listed emergency numbers near the phone, pre-registration with the fire department, visual surveillance systems and certainly the presence of able-bodied neighbors and supportive personnel. Those willing neighbors are vital people who might be able to provide some assistance during almost any emergency. Some neighbors who have their own life challenges are not, and families should be aware of that reality in their selection of where their son or daughter may live. This consideration is not just a matter of finding the most accepting and supportive neighbors, but it’s also a matter of finding the presence of the most capable and helpful neighbors to address all kinds of problems. Individuals and their families looking for housing need to be assured that all these formal and informal kinds of services are embedded wherever they are living. New housing units that are affordable to individuals with disabilities typically have those amenities already.
Housing decisions are often highly personal and individualized, although the options available to individuals with significant disabilities are usually very limited. Policymakers and planners assume the very short menu of housing options will be sufficient because of their misconception that individuals with disabilities are all the same, desire the same life experience and want to spend their entire lifespan in the same place. As we approach the middle of the 21st century, families should advocate that those who are involved in planning housing for individuals with disabilities would be more enlightened and offer many more options and opportunities. With increased options and opportunities will come the need for individuals and their families to become more engaged earlier in the life cycle in order to find the right fit. Challenges of cost or available services are faced by many Americans as they confront the realities of available housing.
Although Medicaid waiver services do not pay for any housing costs — neither rent, nor lease, nor mortgage, nor home taxes, nor maintenance costs — individuals with disabilities may use their supplemental security income (SSI) or their social security disability income (SSDI) to cover any of housing costs. If they so choose, they may apply for a variety of different US Housing and Urban Development (HUD) housing options either in low-income housing development, elderly and disabled housing developments, or through the community voucher program individual rental units scattered throughout the community and enjoy dramatically reduced rental costs. Many individuals are eligible for these HUD subsidies and these kinds of subsidized housing options are limited in number and so competition for space in these units is extremely high. This necessitates the development of waiting lists, some of which may be as long as 10 years! Therefore, it is advisable that youth with disabilities apply as soon as they are eligible at age 18 for residency in any variety of these housing options and get placed on their appropriate waiting list.
Currently, the Rhode Island Housing Agency maintains and controls access to these various HUD options so that individuals may apply to that single point of entry for all government-owned housing units and be put on the waiting list for the community living vouchers. These last are a number of privately-owned, affordable housing units that accept section 8 reimbursement. Often more desirable than government units, these privately-owned settings need to be applied for individually and within a short time frame once the voucher is awarded to an individual. The waiting lists of these particular units tend to be even longer than the waiting lists for the municipally owned units.
Occasionally, people will say, “My child is not ready to move out, and I’m afraid their name will be pulled and they will become eligible for housing when we are not ready. negatively impacting their future eligibility.” This is only partially true; people are offered the right of denial at least twice. That way, if the offer comes when the individual is still not ready to move, they may ask to be returned to the bottom of the list and then work their way back to the top with additional planning and patience. Thus, when individuals have no additional income beyond their monthly Social Security checks, they are able to select and live in safe, relatively modern housing units, including electricity, heat, and water for one-third of their Social Security benefit.
For those families who can afford it, there are legal ways in which they can leave their family home or another home through special needs trust vehicles. While it will be a free place for their loved one to live, they do need to set aside within that trust vehicle sufficient resources to pay for taxes, maintenance, utilities, and other associated housing costs.
While children are living at home with their families and among their neighbors and classmates, they are growing up in a supportive and encouraging environment that is mostly accepting and forgiving of mistakes and errors. But they can become barriers that limit later housing options. Sometime those needs are the result of physical and behavioral challenges that are the consequence of their disability sometimes they are the consequence of concerns for safety and protection sometimes they are the concerns of lack of external support either from technology or from caregiving personnel sometimes they are the result of inadequate support because of fiscal budgetary issues. While children are living at home families do their best to try to help their children learn as many of these skills as possible whether they are ADLs or instrumental activities of daily living. Ultimately the family discovers the amount of support needed and may need some help in acquiring external sources of support that the family may not have had the opportunity to experience part of any planning for the future especially as it relates to housing needs to include systematic exploration of the needs and the development of support that will address those needs to assure safety and security.
Once a person with IDD has moved out of the family home or when their family is no longer able to take care of and protect them, they depend on others around them who are able to step in and help when needed. In other words, they need to be able to depend on their neighbors. Thus, when thinking about housing and planning for the future, families need to be simultaneously thinking about who will provide that protection and support. Historically people have assumed that those caregivers will come through the support of government-funded services. Families have learned that those government services are only capable of providing caretakers. Caretakers are limited in their roles and as paid helpers they are barred from the kinds of relationships that endure beyond the terms of their contract and outside their jobs. They are obligated during their time of employment both in terms of the time that they spend and the duration of their employment. They are provided through the efforts of an industry that is limited by budgets, geography, mission, and duration. Occasionally, some of those caretakers become friends and supporters and then step outside their government-funded missions.
All of us depend on friends and supporters, who are not provided by the government. We often find them where we work, in our neighborhoods, in faith communities, and among the people with whom we spend our leisure-time. Because individuals with disabilities spend most of their time in paid care-giving environments, the choice of where and with whom they live is critical.
A small group or network is the best way to share the things that need to be done, especially if the needs are great. It helps sort out who is doing what and when. A team effort allows you to take care of your other responsibilities. A team effort allows you to spell each other off while ensuring the person who is the focus of your concern is never neglected and taken care of in a timely way. If you do not have such a team or network who can support you and your child with a disability, start now to create one! Any person-centered planning process that involves only family and individuals who are paid to be there is incomplete! As you begin preparing for you loved one’s life without you, remember: The best guarantee of a safe and secure future for a person with a disability are caring, committed friends, family members, acquaintances and supporters, not paid to be actively involved in their life.