Patricia Manko

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Keeping the I in IEP

Posted by Patricia Manko on Tue, Sep 03, 2013 @ 11:56 AM

IEPWhen 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.)

Planning Points

 ~ 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: Federation for Children with Special Needs Massachusetts Families Organizing for Change: Leadership series SPaN Special Needs Advocacy Network

We have been there both personally and professionally. We can help.

Tags: transition planning, Special Needs Planning Timeline

Guardianship Considerations for Individuals with Disabilities

Posted by Patricia Manko on Thu, Jul 11, 2013 @ 01:47 PM

describe the imageGuardianship 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.

Download a template for your Letter of Intent

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.

Contact us for  further information

Tags: Special Needs Financial Planning, Special Needs Trusts, guardianship, special needs Letter of Intent

Housing for People with Disabilities

Posted by Patricia Manko on Fri, Jun 28, 2013 @ 02:31 PM

describe the image
 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

Assessing Supports

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.

Contact us

Tags: Housing, Special Needs Financial Planning

MA Events for Families of Individuals with Special Needs

Posted by Patricia Manko on Thu, Jun 06, 2013 @ 04:15 PM

SNFP Event Calendar June2013 final resized 600Click on the newsletter above to download the printable, full size version of Events for Families, June 2013.

Tags: Special Needs Events in MA

Special Needs Checklist for Your Child: Age 16-22

Posted by Patricia Manko on Wed, May 29, 2013 @ 04:12 PM

person centered plan resized 600

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.

Click here to access Checklist for Interviewing  a Financial Advisor

Tags: transition planning, Special Needs Planning Timeline

Services vs. Supports for Individuals with Special Needs

Posted by Patricia Manko on Wed, May 22, 2013 @ 02:38 PM

Service and supportsThe 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.

We have been there both personally and professionally. We can help.

Tags: Special Needs Financial Planning, Special Needs Planning Timeline

Life Insurance and Special Needs Planning

Posted by Patricia Manko on Wed, May 15, 2013 @ 07:23 PM

LIFE INSURANCEAfter 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.  

Income Replacement:

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 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.

Contact us with questions or for help  determining your family's insurance needs.







Tags: Special Needs Financial Planning, Life Insurance

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