When James moved from Early Intervention ( EI) services to the public school system, it felt like we had moved from a cruise ship to a dinghy. We had so appreciated the services coming to our home and the family centered approach of EI. Our opinions, schedules and plans for James mattered.
When he entered the school system, our experience was very different. The IEP team immediately directed us to a segregated classroom for James. We knew that he belonged with his typical peers. We needed the teachers to support us in our vision for James. What we always tried to do with James was to surround him with people who thought he had limitless potential. If they looked at only his diagnosis, they would deny him of opportunities we thought he should have. We had to work to create a team of "believers".
We continue to search out believers and people who can journey with us and imagine the possibilities. James continues to surprise us and remind us that his potential is limitless.
-Susan, James's mother
When your child reaches age 3, the family's first experience with transition will occur. You will be introduced to the educational system, and your child will need to be determined eligible to receive services through an individualized education program, or IEP. Schools will be making assessments and recommendations with important implications for your child. The parent's role is critical in working to coordinate with educators and service providers to set measurable goals and objectives for their child. Thus begins your journey of educational advocacy and understanding your roles and rights in the process, as well as the various programs, services, and supports schools may offer your child.
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 3 to age 15. (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, Brookes Publishing 2007.)
~ Learn as much as possible about your child's diagnosis.
~ Build and maintain relationships with physicians, schools, therapists, teachers, provider agencies, and your neighborhood community.
~ Register with your local police and fire departments, and let them know you have a child with special needs living in your home. Obtain and complete a child's identification kit, and include a current picture.
~ Get to know your state's laws on public education; make sure you have a clear understanding of your child's entitlements and your rights and responsibilities as the parent.
~ Check your local school and provider agencies for parent support groups, educational workshops, and/or parent advisory councils.
~ Make sure that your budget includes family vacations, evenings out, time away, and activities that you enjoy.
~ Review you current financial and estate plan at least every 3 to 5 years, as well as any time your situation changes.
Some resources that may be helpful at this stage:
fcsn.org Federation for Children with Special Needs
mfofc.org Massachusetts Families Organizing for Change: Leadership series
spanmass.org SPaN Special Needs Advocacy Network
Starting at a very young age we are taught about the value of money. Throughout our lives we associate the value of money to our life experiences such as paying for our own college education, purchasing a car, buying a house, saving for our own children’s college and our ultimate retirement – in addition to the daily expenses of our desired lifestyle.
Your Family's Financial Values or Standards
It is important to talk about the value of money and what it means to you because you can pass these values on to future caretakers and other family members. How you feel about money can also have an impact upon what you can achieve for your child's future. It does not do any good if you do not share your values of money with others. If parents do not articulate their vision, their financial capacity to achieve their goals and their financial intentions, their vision for their child may not happen. It is important to express your values to your financial advisors, trustees, guardians, and legal advisors, but also to your other family members. These individuals most likely will be the ones to follow through on implementing the plan that you have for your child.
SNP PLANNING POINTER:
Take a moment to ask yourself – What does money mean to me? Then take time to share those values with your family –this can be expressed in your Letter of Intent.
Bringing Family Members into Your Discussions
There are many ways to discuss your vision and your finances. It is often easiest to begin this process in a gradual manner and in an informal environment. Although it is important to have all family members in agreement, scheduling initial discussions in a formal meeting or large family setting is not always the best. We recommend speaking to one child at a time, to get their feelings about their willingness to help. This will give them the opportunity to share ideas with you rather than you telling them what you hope will happen. Remember, caring for a family member with disabilities is a lifetime commitment that you do not want to force on anyone, yet it is important for them to know your intentions.
After everyone has had an opportunity to discuss their feelings and ideas in an informal way, you may wish to plan a discussion with everyone at once. Since every family’s dynamics are unique, you will find the best way to communicate with your family. The following steps should help to move the communication process along smoothly:
- Share your vision
- Talk about the amount of money you plan to have available to support your vision. You do not have to reveal all of your financial matters. You can choose to only mention the financial aspects that pertain to the needs of the family member with a disability.
- Determine the best person to take on each role. For example, who is the best with finances? That person may be a good trustee or trust advisor of a Special Needs Trust. Who is most involved in the day to day life of the child? That person may be a good guardian.
- Ask family members if they feel able to perform their roles independently. If not,design your plan to give them resources to work with. For example, let them know that they could hire an investment advisor to help with the trust management or a social worker to help oversee supports.
In our combined 30-plus years of planning, one of the biggest obstacles that we have encountered is that people do not feel comfortable talking about how much money they have. Even professionals in the field of providing services to families, including government agency employees that serve families, do not feel comfortable talking about money or the specific costs of providing services to individuals with disabilities.
Although Charles is receiving all the benefits that he is eligible for and living independently, we feel that it is not enough for him to simply have what the government provides. We supplement his expenses by about $1,000 a month. This gives him the sense of self-worth and control to be able to do what he likes rather than do what someone else wants him to do. He has schizophrenia and his sense of self-worth is most important to his ability to function in life. In working with our financial planner and our attorney, we made arrangements for our other son to provide this supplement to support Charles’ needs without jeopardizing his government benefits when we are no longer able to.
-- Charles’ father
Sometimes parents feel that they must treat all of their children equally. They feel that their children expect it. However, in many cases children without disabilities are more than willing to forego any type of inheritance to guarantee security for their brother or sister with a disability. They understand the financial realities and would rather make sure their brother or sister is taken care of and would not expect that everything is shared equally.
One of the first steps that is required for you to be able to achieve financial security for your child is to overcome the reluctance to discuss the issues of money. We all know it takes money to provide services, staff, housing expenses, employment supports, transportation, education, health care services and the like. We also know that the government does not have an endless supply of money to funed these services.
Maximize Eligibility for Government Benefits
With this in mind, families should plan to maximize eligibility for governmenaboutof what funds are available to your family member– both personally and publicly –how to secure them and how to allocate them. We will be posting a blog about public resources, which we call government factors, within the next few weeks.
Understand Where You Are and Where You Would Like to Be
In order to maximize your own personal resources, you must first understand where you are financially. Do you have the money to do the things you and your family like to do today? Are you happy where you are financially? If not, what can you do to change things?
The next step is to know where you want to be. What lifestyle do you envision for you and your family, today and in the future? What do you consider retirement – is it when you stop working full time, when you stop working the hours that you currently work, or when you begin to work part time or pursue a hobby for income? What do you want to do for your vacations, travel time, fun time, and the like? How philanthropic do you want to be? Where do you envision living when you retire? In what type of environment do you envision your child living ? Do you envision him or her living totally independent from you or do you intend to always be involved in the daily activities of your child's life for as long as you are able to?
Create a Plan
The next step is to prepare an action plan to get you where you want to be financially. This is where having qualified advisors to guide you through the planning process can be most beneficial.
The key issue to consider in the financial factors is maximizing personal resources. This includes maximizing tax planning strategies – both income tax and estate tax planning. The proper use of financial products can also be a key factor to financial success. You should also incorporate your group employee benefits in the planning process. These would include your group health, life and disability insurance coverage,retirement plans, stock option plans, stock purchase plans, flexible spending plans, etc.. Determine those that are currently available to you and your family as well as those available to your family upon your death and /or retirement. You should also determine which employee benefits are transferable and/or portable upon termination of your employment. Adequately protecting your income and assets in the event of a premature death and/or disability of a parent is critical.
Any type of planning process, from planning a vacation to building a house, has a defined beginning and ending point. The traditional financial planning process involves identifying resources and listing specific goals that can be quantified. Some common examples of quantifiable goals might include paying cash for your next automobile, saving for four years of college tuition payments ,purchasing a second home for retirement, or generating a retirement income equal to 65%-75% of your pre-retirement income.
Planning for a family member with disabilities can be a much more challenging process. There is no defined beginning or ending point. Needs and abilities of the individual can change rapidly and will vary significantly over time. It is only natural for the family of a young child to want to have a concrete plan in place that provides adequate assets and resources for their child’s lifetime needs. Families must realize, however, that it may not be possible to predict accurately the long-term costs involved in providing supports for an individual over his/her lifetime.
Assumptions can be made of future expenses. We can fairly accurately determine the costs of a physical residence – a house or a condo – in a geographic area based on current market values. We can also estimate the costs of maintaining the physical residence. Often, however, we cannot always accurately determine the costs of supports until the needs are identified. Once the needs are somewhat identified, we can develop a range of the probable expenses necessary to provide these supports today and in the future. Before implementing a residential plan it is highly recommended that you work with an independent consultant to determine the level of supports required. You then need to develop a model that meets both your personal preferences and your financial abilities to maintain the model, both during your lifetime and upon your death.
So how do we determine how much money is needed? And how much is too much? Just as the educational needs of every child are unique, so are the long-term planning needs of every individual with special needs. Even two individuals with a similar medical and/or cognitive diagnosis, can have significantly different support requirements. With these varying requirements, costs will also vary. There is no clear answer; the best we can do is to maximize all resources and coordinate all of the Five Factors.That is why it is so important to have a comprehensive plan and to reevaluate it periodically.
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Guardianship is a legal means of protecting children and "incompetent adults" (in legal terms, adults who cannot take care of themselves, make decisions that are in their own best interest, or handle their assets due to a physical or mental disability). When the court determines that a person is incapable of handling either their personal or financial affairs a guardian will be appointed.
The subject of guardianship for an adult child with disabilities is of concern to most parents. Parents of children with severe disabilities often assume that they can continue to be their adult child's legal guardian during the child's entire life.
Although it may be obvious to a parent that a child does not have the capacity to make informed decisions, legally an adult is presumed competent unless otherwise determined to be incompetent after a competency proceeding. Once an individual reaches the age of 18, the parent is no longer the individual's legal guardian. Parents need to explore legal options available to protect their child from unscrupulous individuals who may exploit their child's inability to make informed choices.
Some things to know when considering guardianship:
a. A guardian of the person is responsible for monitoring the care of the person with disabilities to ensure that the individual is receiving proper care and supervision. The guardian is responsible for decisions regarding most medical care, education, and vocational issues.
b. A guardian of the estate or conservatorship should be considered for a person with disabilities who is unable to manage their finances and have income from sources other than benefit checks, or have other assets and/or property.
c. A guardianship may be limited to certain areas of decision making, such as decisions about medical treatment or medications in order to allow the individual to continue making their own decisions in all other areas.
d. A temporary guardian or conservator may be appointed in an emergency situation when certain decisions must be made immediately.
If an individual with a disability is capable of making some but not all decisions, one or more of the alternatives to guardianship discussed here should be considered. These alternatives to guardianship are listed from least restrictive to most restrictive:
1. A joint bank account can be created to prevent rash expenditures. Arrangements can be made with most banks for benefits checks, such as Social Security or SSI payments, to be sent directly to the bank for deposit. (Remember to keep this account balance below $2,000.)
2. A representative payee can be named to manage the funds of a person with a disability who receives benefits checks from Social Security, Railroad Retirement, or the Veterans Benefits Administration. Benefits checks are sent to the representative payee.
3. A durable power of attorney (POA) for property is a legal document that grants one person the legal authority to handle the financial affairs of another. Generally, the use of a POA should be used when the individual with disabilities has the capacity to make basic meaningful decisions and does not require full guardianship but may not be able to make complex financial decisions without support.
4. A durable POA for health care, also known as a health care proxy, should be considered for individuals who are presently capable of making decisions about their health care and wish to anticipate possibly future incompetence.
5. An appointment of advocate and authorization allows a person with a disability to designate an agent to advocate on his or her behalf with administrative agencies such as the state department of cognitive disability, the department of mental health services, or the department of medical assistance.
6. Trusts may be an appropriate alternative to appointment of guardian in some circumstances. A trust is a legal plan for placing funds and other assets in the control of a trustee for the benefit of an individual with a disability - or even for those with no known disability.
7. As mentioned previously, guardianship is an option for persons who, because of mental illness, developmental disability, or physical disability, lack sufficient understanding or capacity to make or communicate responsible decisions concerning their care and financial affairs. Guardians are approved and appointed by the court. Guardianships are also supervised by the court. The guardian provides a report on the status of the individual to the court annually.
In general, the guardian or conservator is responsible for handling the individual's financial resources, but is not personally financially responsible for them from his or her own resources.
This list of alternatives to guardianship is not exhaustive, but worth speaking with an attorney about. As with all legal decisions, we suggest you seek legal advice from an attorney who is knowledgeable in disability law in the individual's state of residence.
|Read Our Story of Creating a Home for our Son|
When planning a home for an individual with disabilities, the cost of the physical housing is many times a surprisingly small percentage of the total expense.
There are 2 primary factors to consider in planning for lifetime residential options for your child with disabilities. They are:
- Supports required-the level of assistance they need in order to manage their day to day activities
- Your financial resources
The support an individual may require ranges from medically complex situations or individuals requiring assistance in all activities of daily living to individuals in need of minimal supports.
Once you have identified the level of support required, you must determine the level of staffing necessary to provide this support. Staff is usually the largest expense to be considered when quantifying how much your child’s residential options will cost. There are planning techniques that may be used to maintain the level of services your child requires and contain the costs within your budget. One example of this is to find opportunities to change the ratio of staff to individuals. Since the quality of a program depends on the support staff, establishing the optimum ratio requires skill and experience.
Planning for a Rich & Meaningful Life
Most importantly, the goal of planning should be to reach beyond your child’s baseline needs and provide for them an opportunity for an enriched and meaningful life. This goal requires a great deal of time and garnering of resources. We are working at this goal right now and you may find it helpful to read about the process we have employed in planning for a home for our son James, in our blog, Diary of a Dream.
There is no one-size-fits-all best solution for all families. An investment by parents in a residence in which their child will live is a factor in their own personal tax, retirement and estate planning. The key is to determine the best situation for you and your family. If you have questions regarding your own individual situation, please give us a call.
The most important asset your child has is YOU.
Think for a moment about the specific instructions or guidelines you give to your child or his or her caregiver when you leave for just an evening out or a weekend away.Imagine if you never came back.
Many families need a catalyst to encourage them to begin the planning process. A Letter of Intent simplifies the planning process by initially asking basic biographic information and progresses to more thoughtful and provoking questions. Since developing the Five Factors of comprehensive special needs planning, we have reorganized the content based upon these key elements in planning for your child’s future. By completing a Letter of Intent for your family member, you will begin to develop goals and objectives to assist you in the overall planning process. Ultimately, it will provide the details required for future caregivers to fulfill their expected roles based upon your desires and concerns.
No matter who you have entrusted to care for your child when you are gone—sibling, friend, relative, trustee, guardian, or organization—you can help guide that person by providing them the knowledge that only you, as a parent, possess. This is not a legally binding document, but it is still perhaps one of the most important documents you can prepare for the future well-being of your child. This is an opportunity to leave a legacy of all that you have accomplished with your child.
You need to periodically review and revise this Letter of Intent, perhaps on your child’s birthday, making certain to provide your child’s future caregiver with an updated copy. As every child is unique, so should this document be unique. Feel free to expand where needed and omit areas that are not applicable. Be flexible, be clear, and feel free to make it as personal as you wish.