At age 16, your son or daughter is probably established in an appropriate school setting, and you have worked to help develop appropriate social connections. Now is the time to think ahead to the day your young adult turns 22, when the bus no longer arrives to take him or her to school. What do you want that day and the days after that to look like? What does your young adult child need to succeed? This is the stage where you should be focusing on the future and what you want that future
Just as every child is unique, the way each parent approaches their planning is unique. Below are a few basic planning points that are unique in planning for your child from age 16 to age 21. (These steps are in addition to the comprehensive Planning Points outlined in our book, The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child's Life.)
~ Your child's abilities may be more defined by this stage, and you may be able to have a glimpse of his or her future abilities as well.
~ Now is the time to explore options and alternatives for when your child reaches the age of 21 or 22 (the age at which your state no longer provides public education services). This is called transition planning, and focuses on residential and vocational opportunities for your child when he or she reaches adulthood.
~ Get involved in any person-centered planning programs that may be available to your family.
~ Obtain eligibility information for any and all government agencies in your state that may potentially provide funding and services for your child after turning age 22.
~ Interview and ultimately identify the most appropriate agency to provide residential and/or vocational services based on your child's abilities. Vocational services may also include a day program for your child to attend, again depending upon his or her abilities.
~ If you feel that your child will not be able to make decisions on his or her own behalf upon reaching age 18, you should consider the possibility of filing for guardianship (see our previous newsletter on guardianship and less restrictive alternatives).
~ Prepare your child to financially qualify for SSI and/or Medicaid benefits. This means that assets in his or her name, including custodial accounts, should be less than $2000 (or the current asset limits).
~ In the event that your child's assets are in excess of the limit and he or she would not financially qualify for SSI and/or Medicaid, you should contact a CFP® and an attorney knowledgeable in government benefits eligibility, to discuss options of spending down the assets or transferring them to a special needs trust (OBRA'93 Payback Trust or d4(A) Trust) prior to applying for benefits.
~ Assess your overall financial situation to help determine your ability to achieve your financial goals, including college funding for other children, financial requirements to fund the supplemental needs of your child with disabilities, and your own retirement goals.
~ Review your estate planning documents to be mindful of estate tax planning considerations, ownership and beneficiary designations of assets, retirement plans, and life insurance policies.
~ Talk to your other children about your plans and your vision for your child with special needs; they may have input to share as well.
~ Communicate with extended family members, including grandparents, aunts, uncles, and other friends and relatives, who may be interested in transferring wealth to you and your child. Tell them that you are in the process of planning for your child's future security.
This is the ideal stage to begin planning for the future for your child. You still have time to make changes and to explore options if you have not done so already. This would be the ideal time to hire an independent consultant, if you have not already done so.
The Difference between Service and Support
Today, advocates and professionals often use the word “support” to include anything that someone may need to live in his or her community. Often in human or disability services, an individual has to accept a change in location or compromise in the type of supports needed.
The two examples below describe the differences between support and service.
Case 1 - After transitioning from Early Intervention into their city’s school system, a family was looking forward to having their child attend their local elementary school. In their transition meeting, they were informed that their son would be sent across town to the one after-school program established to accommodate children with disabilities. However, the family wanted their child to make stronger connections with children at their local school. After a series of meetings, the school district agreed to allocate “supports” through a voucher or other procedure to increase the capability of the child’s local school. This was accomplished by hiring a part-time staff person and budgeting some training for the other teachers at the local after-school program.
Case 2- After years of having a successful job-coaching arrangement while in high school, an individual with disabilities turned age 22 and was told that he had to enter a sheltered workshop for employment services 10 miles away from his home. It was a disappointment for his parents because their son had done so well working in the community. The policy for the adult services system had been to invest resources into local workshops in an effort to provide services to adults. Feeling that this was not appropriate for their child, the parents had many meetings with the disability agency and contacted their legislator in an effort to develop a job-coaching arrangement similar to what they had before to support their child in the community. Fortunately, they succeeded and were given the ability to interview three agencies that would provide them with the supported employment services that met their son's individual needs.
The preceding examples highlight the differences between cases in which services are standardized to meet the needs of many and those in which supports are developed around an individual’s needs. However, one must realize that every state will have varying degrees of flexibility built into their support and service delivery system. In planning your child's future, it is suggested that you push to have supports that are built around your child's particular needs. Placing emphasis on supports involves developing a program around the needs of the individual. An environment that is driven by providing services frequently builds standardized programs for all.
The Life Cycle of Services and Supports
Throughout our lives we change and evolve. This is no different for individuals with disabilities. As a child, most of the options are consistent with options that other children face. As your child approaches the teen years, it will be vital to change perspectives and help him or her exercise more control and opinions concerning daily life. This will set a foundation that will assist your child with disabilities to build a life that he or she feels is consistent with inner desires and dreams. Avoid the temptation to accept the first service that is offered to you; instead, enter the process with a clear idea of what you and your child are seeking.
Although the Special Needs Planning Timeline covers multiple planning pressure points, there are three major periods where supports and services change regardless of your location. The major ages that trigger a change in services and/or supports are at your child’s birth, at age 3, and at age 22. There are additional pressure point ages and changes that trigger key planning considerations. These include transition planning at age 16, guardianship and Social Security or SSI at age 18, as well as the death, disability, or retirement of a parent.
Birth to Age 3 When you discover your child has a disability, it is important to obtain Early Intervention services as soon as possible. In addition, look for “parent-to-parent” programs where you can connect with another parent who is raising a child with a disability. Other parents can mentor you and share their information and knowledge. Apply for the Early Intervention services even if you think you are not quite ready to start them, because there may be a waiting period. Research shows that the earlier infants receive stimulation and further professional supports, such as physical, occupational, and speech therapy, the better the child does in reaching milestones.
Age 3 to Adolescence Transition to school is a very important period. At age 3, the school system is responsible for offering educational and related services. In addition, if a child has special health care needs, such as a chronic illness, a disabling condition, or a frequent need for medical technology, check out eligibility for your state’s TEFRA program (the Tax Equity and Fiscal Responsibility Act of 1982) or Special Health Care Needs Program. Early Intervention staff will be of great assistance to explore such options, as well to help with the transition to school.
You may face some challenges during the school year, such as:
- Helping your child develop a social network
- Obtaining an appropriate education program while helping your child get included in the everyday life of the school
- Helping your child learn about his or her body changes during adolescence
- Making sure you work with your child, beginning at age 16 years or earlier, to develop transition goals at school and outside school to prepare for adult life
- Eventually developing a plan with your child and others who care that reflects his or her dreams and desires
Age 22 years and Beyond Becoming an adult isn’t easy for any of us. If your child needs adult services for any aspect of his or her life, you should start learning about the funding and programs offered by the time he or she is age 18 and still a student. Waiting until the last minute may mean limiting or delaying options in adulthood. Different organizations have materials that you can read to help prepare for this stage, but the foundation of the plan should be developed during the teen years.
After legal and estate planning, risk management – or insurance protection – is perhaps the second most important building block to financial security. In an instant, an unforeseen catastrophe or illness could change your financial picture for life. Not only is it important to protect the family's lifestyle and income needs in the event of a premature death or disability of a parent, but it is also critical to plan for the supplemental lifetime needs of the child with special needs.
Special Considerations for Life Insurance in Special Needs Planning
The use of life insurance in special needs planning is somewhat different than in traditional planning . It is critical to plan for the financial problem of one of the most catastrophic events in life; a parent’s death.
In planning for a traditional family, often the largest amount of life insurance protection is purchased for the wage-earning parent. Following this same strategy is one of the most common errors a family with special needs tends to make. One cannot assume there is no financial value lost in the event of death of the primary caregiving parent. Although it is difficult to place a financial value on the parent that does not work outside of the home, or provide the majority of the income to the family, it is critical to account for this value. This often means that you have to look at each parent to determine the human life value. This is ultimately converted to a dollar value to determine the life insurance protection needed.
In the traditional planning model, the amount of life insurance needed is often simplified to be a function of the annual income. For example, to determine the life insurance need of a wage earner, a simple technique is to multiply your annual earnings by 5 or 10 times or the number of years you want to ensure that income for your family is continued. This means tht if you earn $100,000 per year, you should have from $500,000 to $1,000,000 of life insurance protection. A more detailed approach would be to complete a capital needs analysis. This is the analysis that most life insurance professionals and financial planners use. This calculation involves determining the present value of money needed to pay for short-mid-and long-term goals a family identiifies. For families with special needs, insurance coverage requirements often extend well beyond the traditional family's timeline fo having enough money to support children through their school years. Special needs planning requires planning for two generations, anticipating a possible need to support the child with disabilities beyond the school years and throughout his or her life.
In special needs planning, the first step in determining life insurance needs is to determine the loss of income to the household with the death of a parent. Next it is important to identify the expenses that will continue upon the death of that parent, particularly money needed to address future family goals. Looking at income alone can be misleading because variations in saving and spending affect planning. In the event that a family spends a larger percentage of their monthly income, they have two options:1. to insure for this larger amount to maintain the family lifestyle, or 2.to anticipate lifestyle changes required by the family due to a decrease in income after the death of a parent. For families who are diligent at saving for their future – for retirement, education, supplemental needs, etc. – a loss of income may prevent the ability to maintain this saving pattern. Families must address issues of both current spending to maintain their lifestyle and their savings and investments for the future.
The other common error in purchasing life insurance is buying only term life insurance. Term insurance is life insurance that is designed to last for a predetermined number of years, such as 5,10, 20 or possibly 30 years if applied for at an early age. Term insurance works in the event that the need for protection is for only a temporary period of time. In special needs planning, the “need” is not temporary – it is permanent. As we have discussed, the need to address that second generation of financial issues comes into play once again. There may be a need for permanent life insurance protection, rather than term life insurance that only lasts until the children have grown in 20 years. A recommended strategy is to acquire a combination of both term and permanent insurance.
Best Kept Secret World Premiere
Please join The Arc of Massachusetts this Saturday, April 27 at 8 PM, at the Somerville Theatre for the world premiere of “Best Kept Secret,” a documentary that provides a window into the world of a Newark, NJ public school teacher as she struggles to prepare her students with autism to survive in the brutal world that awaits them once they graduate.
This film has received a grant from the Sundance Institute and support from U.S. Senator Bob Mendendez.
Watch the trailer
The Punk Syndrome
Pertti Kurikan Nimipäivät (Pertti Kurikka's Name Day), a punk band from Finland, is the subject of the documentary "The Punk Syndrome," which won the SXGlobal Audience Award at this year's SXSW Film Festival.
The documentary provides a sincere and honest look at the lives of the four band members, who are all adults living with varying degrees of intellectual disabilities.
The band is made up of Pertti Kurikka (guitar), Kari Aalito (vocals), Sami Helle (bass) and Toni Välitalo (drums).
The band"s members, Pertti, Kari, Toni and Sami, play their music with a lot of attitude and pride. We follow these professional musicians on their journey from obscurity to popularity. We watch them fight, fall in love and witness long days in the recording studio and on tour. It’s a film about the essence of punk - it's a story of people with disabilities rebelling against the mainstream.
Watch the trailer below.
Caution- the content contains profanity and images that may be offensive to some viewers. The band's message however, comes across loud and clear in any language.
Most special-needs families are not properly planning for their children’s futures and the consequences are potentially catastrophic (Lauderdale et al. 2010). While planning for the future of special-needs loved ones has always been a necessity, it’s paramount today because of the higher incidence of diagnosed disabilities, longer life spans resulting from medical advancements, increasing long-term care costs, and the reduction of government support (Erickson and Lee 2008; Hoyt and Pollock 2003; Lauderdale and Huston 2012b; Nadworny and Haddad 2007; Saposnek, et al. 2005).
Emotional and legal issues complicate creating an adequate comprehensive plan. Financial advisers can begin to address the concerns particular to each family by forming a team of legal and mental health professionals to work closely with families while preparing a suitable plan. Special needs trusts, or SNTs, remain vital to planning for disabled individuals to protect government benefits eligibility, manage assets, and provide care continuity when guardianship is deemed necessary (Stone 2006). For keeping the social and emotional consequences to a minimum, letters of intent are also valuable tools to help transition care providers with as little stress on the special-needs child as possible.
Financial planners can increase their accessibility to special-needs families by preparing themselves to address the technical and emotional challenges through a holistic team approach.
While an SNT is necessary in almost all cases, there is much more to special-needs planning than creating a plan that includes an SNT. A letter of intent—the ideal starting point for the financial planner to inform the financial components within the planning process, and collaboration with mental health and legal professionals—will greatly enhance the effectiveness of the services the financial planner is able to provide special-needs clients.
Though the financial plan for a special-needs family is an amplified form of a traditional plan, the team of professionals is necessary for addressing the social and emotional issues particular to each family. Addressing such concerns directly affects the ultimate form and adoption of the plan designed specifically for families with special-needs dependents.