Disability affects millions of Americans and their families, yet remains poorly understood by society at large. Persons with disability need support, but they also need independence and the opportunity to strive and succeed. Family members are on the front lines of this struggle, working to find the right balance between support and autonomy.
A Special Needs Trust (“SNT”) can help individuals and families in two important ways. First, an SNT works in cooperation with public benefit programs, allowing the beneficiary to receive basic income, housing, medical care and other daily support through public programs, yet have financial resources to pay for things that the public programs can’t cover.
Second, an SNT offers protection for the future, allowing parents or siblings to set aside assets with a trusted fiduciary for the time when they are gone, or unable to provide care and protection for their loved one.
Ingredients of a Full Life
Living with disability does not mean giving up on health. Healthy living means the same thing for everyone—being well enough to lead a full, active life. Planning and participating in activities helps to keep us healthy, no less if we have a disability than if we don’t. The challenge added by a disability may include finding transportation, handicapped access to recreational or entertainment venues, ensuring caregiver availability and providing opportunity to join in fully with the activity.
There are also more direct ways that health can be improved or protected, such as alternative medicine, second opinions, home care consultants, dietary supplements, and other direct care that Medicaid and health insurance may not pay for. These are areas where an SNT may be helpful.
Physical limitations sometimes create safety risks associated with daily activities, such as using public transportation, household technology, handicapped-inaccessible buildings and inadequate emergency egress. Isolation at home often increases these risks. There is no perfect solution, but handicapped-accessible transportation, home modifications and household risk assessments can help significantly.
Assistive technology has expanded dramatically over the past few decades, spurred on by rapid advances in computing, miniaturization, environmental interfacing and materials technology. Information technology (IT) alone has created opportunities for persons with limited mobility that were unimaginable 50 years ago.
While assistive technology is available through many public and private agencies for specific conditions and disabilities, funds in an SNT are the most flexible resource for assistive technology of all kinds. Trust resources can pay not only to buy, upgrade or replace obsolete equipment, but also for consultants to recommend or set up support systems using the latest technology.
Education and Training
The IT revolution has impacted education and training of all kinds, but especially for persons with any kind of physical limitation related to a disability. Entire degree programs now can be taken, and degrees earned, online. Some kinds of professional training also can be done online, including courses and certificate programs offered by university extension schools.
Traditional schooling and training programs also are available, and most are accessible to persons with disabilities. An active mind is one of the most important features of living well. Family and friends can help, as well, both with transportation and logistical support, and by sharing in the discoveries that education can bring. Individuals learn more than just the subject matter when they embark on new learning adventures. They learn something about themselves as well.
Transitions are an essential part of life. Among other things, we transition from home to school, from teenager to young adult, and from living with family to living more independently. The limitations imposed by disability can add to the challenge of transitions. For example, many families learn, to their dismay, that access to state services for a disabled child may require that the parent become legal guardian when the child turns 18. Understanding the reasons for this intrusion on the relationship can help to lessen the shock. It also can be helpful to work with knowledgeable legal counsel or state-funded case managers to know what’s required, and how to minimize the stress.
Transitions between living situations also can be uniquely stressful. Often this occurs when a family member passes away or has to move away. As much as possible, families should plan ahead for physical relocations. An SNT may be part of the planning, but it usually is not a complete answer. A professional care manager should be consulted, and estate planning should be pursued diligently, to ease the disruptions of relocation when it occurs.
In addition, as support for subsidized housing dwindles both federally and locally, housing arrangements increasingly are the number one concern of estate planning for a disabled family member. Most other kinds of support can be patched together if a person with disability suddenly is left alone. But housing has become incredibly difficult, and will remain so until there are changes in public policy on this issue.
Independence is tremendously important to all of us, whether disabled or not. Persons with disability often have to depend on others more than most people, which can make it especially important to have as much control as they can over the parts of their lives for which they do not need help.
All of the other elements of a full life are important to having independence. Health and safety are important; assistive technology can make a tremendous difference in the ability to live independently; education and training may allow a person to work from home and become self-supporting; and all of the planning that goes into preparing for smooth transitions in life pays big dividends when it results in the ability to live, work and enjoy life independently.
Communities vary tremendously in the kind of support that they offer to persons with disabilities. For younger persons, local ARC organizations may provide programming, counseling, peer groups and other activities. The Massachusetts Developmental Disabilities Counsel is a clearing house for a large number of groups and organizations that connect individuals with each other. One of the best ways to learn about the kinds of support that are available is to connect with someone who is already networked.
Support from the Community
There are many things that communities and other people can do to make the lives of persons who are disabled more comfortable, simply by being included. A group in Surrey, England, put together “12 basic requirements to ensure equality for all within our society:”
- Full access to the Environment (towns, countryside & buildings)
- An accessible Transport system
- Technical aids and equipment
- Accessible/adapted housing
- Personal Assistance and support
- Inclusive Education and Training
- An adequate Income
- Equal opportunities for Employment
- Appropriate and accessible Information
- Advocacy (towards self-advocacy)
- Appropriate and Accessible Health Care
Many of these basic services are the obligation of local, state or national government. But some of them, like advocacy, opportunities for employment and inclusive education are activities that we, as private citizens, can encourage individually and in our communities.
Paying for Support
Some of the needs of persons with disability are the responsibility of government, and providing access to support is a major goal of any family or trustee who hopes to make a positive difference in the individual’s life. Among the government resources that make a difference in the lives of disabled persons are:
- Public housing
- Public health care (Medicare or Medicaid)
- Public income support (Supplemental Security Income (SSI) or Social Security Disability Income (SSDI))
- Food stamps
- The Ride
- Services from the Department of Developmental Disability
- Services from the Department of Mental Health
Special Needs Trusts (SNTs) work with public benefits by providing supplemental services, without disqualifying the beneficiary from public services. This is especially important for those who depend on SSI, which has a $2,000 asset limit. SNTs allow the individual to set aside any “excess” assets, in a qualifying trust that pays back the state after the individual’s lifetime. During lifetime, the trust can provide a better quality of life, by providing support that SSI alone in not able to pay for.