February 20

What Happens If You Can No Longer Care for Your Disabled Child?

For the vast majority of families, parents have the sole responsibility for the care and support of a child with special needs or a disability. We’ve discussed the need to plan for the care of your child should you pre-decease them, but what happens if you yourself become incapacitated?

caring for disabled adult

With children living longer and 75% of adults with disabilities living at home, there are almost one million households with caregivers over the age of 60.  A report from Family and Individual Needs for Disability Supports (FINDS) found that most caregivers have serious concerns about what happens to their child after they can no longer provide care. And for good reason. Consider these facts:

  • About one in seven Americans over the age of 70 have some form of cognitive impairment. That figure increases dramatically as we age, with 37.4 percent of adults in the U.S. who are 90 and older having a level of diminished capacity.
  • There unfortunately is a trend in financial exploitation of elders and individuals with cognitive impairments, such as Alzheimer’s or dementia, are especially vulnerable.
  • Most individuals interested in estate planning are focused on providing for their loved ones after death, but an essential aspect of overall plan is ensuring the individual themselves are covered during life.
January 29

How To Write a Letter of Intent

Special Needs Planning Basics

letter of intentIt’s difficult to know where to start with writing a letter of intent. The information provided here is designed to give you some ideas of what you might want to include, and we’ve provided a downloadable template to help you get started. Keep in mind that the letter of intent is not considered a legal document. However, it has the advantage of going beyond legal instruments to help caregivers and the courts better understand the person it is established for and their needs as well as your personal care wishes for them. Also, please treat your letter of intent as a “living” document, one you review and update regularly (at least yearly).

Here are some areas to consider when writing your letter of intent. They are not exclusive, but a good place to begin:

August 11

Supporting Your Child with Disabilities in College

college studentThe journey to get here has been challenging and rewarding. You couldn’t be prouder of your child for successfully navigating an educational system that simply wasn’t built for him or her. You are both grateful for the services and benefits that have made it possible to succeed. And, this isn’t the end. The next step may be college. Your child may feel ready to take the intimidating plunge of life away from home, but the unknowns are many. What will this next phase of life look like? What supports will be available? Will needed public benefits continue? How will your role change as your child enters adulthood? While every situation is different, there are some things every family of a child with special needs should consider before driving up to campus on move-in day.

Do a needs analysis.

Talk with your child about what life and learning will be like in a college setting. Identify what supports currently in place will need to continue and whether additional supports might be needed. Consider the supports you personally provide at home for ADLs (Activities of Daily Living) and how those could be best managed at school.

Know the benefits picture.

Depending on whether your child is receiving federal or state benefits, such as cash or medical assistance, you’ll want to understand whether anything will change once your child turns 18 and leaves home for school. This will include identifying basic eligibility criteria, understanding what periodic assessments may be required, and determining key deadlines for submitting applications or required documentation.

Understand resources available on campus.

There is a significant shift of the support dynamic for children with disabilities at the college level. While your child’s secondary school education was proactively managed through an IEP (Individualized Education Plan) or a 504 plan, over which you played a key role, colleges work directly with students on a reactive basis (i.e., the student generally is required to request support). Although colleges are not subject to the Individuals with Disabilities Act that high schools are, they do fall under the Americans with Disabilities Act designed to ensure equal access and protect individuals from discrimination. Accordingly, almost all colleges have additional services for students with learning, attention, and other disabilities, but these are often not well-publicized. In order to access services or get needed accommodations, your child will need to register separately with the school’s disability services office. (Accommodations might include note-takers, audio recordings, use of a laptop, or different testing arrangements.) Being notified by the school that a disabilities services office is available, and where it is located, is important. If that does not occur, however, you proactively may request this information at the beginning of the school year so you can assist your child in making an initial attempt to access the accommodations needed.

Consider information access.

When a child turns 18, he or she is considered a legal adult which shifts access to and authority over medical, financial, and educational records from parents to the child. Unless you already have a signed HIPAA (Health Insurance Portability and Accountability Act) release form, you will want to talk with your child about the importance of your accessing medical information and how you might be able to assist your child in making decisions.

Empower your student and create an action plan.

In most cases, benefits for individuals with special needs were historically designed more for those who stay home than individuals who are seeking advanced education and a meaningful career path. Compounding the challenge is the shift from parents to the young adult to drive the supports provided by a school. This can be a major stumbling block for many students who always have relied on their parents to do the heavy lifting within a proactively supportive system. The ability of a student to self-advocate can spell the difference between success and failure. Consider the story of Anna Landre, a high school valedictorian attending Georgetown University who recently challenged significant cuts made by her state in the supports she was receiving through the Medicaid program. The proposed decrease in supports would have jeopardized her ability to continue her college education with profound future life impact. Where others might have understandably given up, her perseverance and public support ultimately resulted in a reinstatement of those benefits. Helping your child to understand that, once on campus, the burden for advocacy and requesting support will rest primarily on him or her, and assisting in devising a plan to obtain that support, will be key.

Sending a child to college is challenging even under the most optimum of circumstances. When that student is an individual with special needs, understanding, conveying, and obtaining needed support is critical. To the extent you are able, identifying and understanding available public benefits and the hurdles which may exist will help in knowing the steps you and your child should take now to guarantee your child’s success.


Milestone Ages Special Needs Planning

June 28

Caring For Your Disabled Child After You’re Gone

If you’ve ever been faced with managing the details of administering a deceased loved one’s estate, you appreciate how confusing and stressful the entire process can be.  You probably never told yourself, “I wish my relatives had done less planning.” In fact, the more detailed and thoughtful an estate plan is, the clearer and easier it will be to follow the individual’s wishes after death.

It’s never easy to think about a time when we’re no longer here. But, for the parent or guardian of a child with disabilities or special needs, planning ahead is especially critical. A well-considered estate plan includes far more than good financial planning. All too often, we find that parents or guardians have ensured that sufficient assets are available for loved ones but fail to consider how the assets should be managed or what type of assistance their family may need.

AdobeStock_212349427_caring for family

Of course, the planning process may feel easier said than done. How do you start identifying the central issues you want to address as you look ahead to ensure the well-being of your loved ones after you are gone? Start by thinking generally about three broad subject areas:

Assets & Benefits

If your child receives some type of governmental supports, it often is vital for the services to continue uninterrupted. You should think beyond your life insurance policies and estate assets to consider the public benefits your child currently receives or may be eligible to receive in the future. When pulling together and organizing documents and your estate plan for the individuals you have chosen to benefit, make sure you have up-to-date information about every insurance policy or retirement benefit, and confirm both the primary and contingent beneficiary designations assigned to each asset. Preparing a list of informational resources for governmental benefits and a summary of your child’s current benefits information, including timelines of when he or she became eligible for assistance and the type of services received, can be extremely helpful to those handling affairs after you are gone. When it comes to monetary assets and tangible physical objects, don’t neglect to include information about any real estate deeds, mortgages, liens, investment account information, as well as bank accounts and an inventory of your valuables.


In today’s increasingly online world, access to information held digitally can be a major stumbling block. Take some time to carefully consider how your executor (under a last will and testament) or successor trustee (under a revocable trust intended to avoid probate) would be able to access details, including key points of contact, about each account, life insurance policy, and any other asset you may own. There should be a list of login information, including current usernames and passwords.  Be sure to update this list as you change those logins in the future – there are many choices that can simplify the process when it comes to password security management, including tools like LastPass, Dashlane, etc.  Storing account information in an organized way and keeping updated account numbers and current valuations in a safe place, will save precious time and frustration for those you have asked to step in and help.  It is a personal preference as to how much information and access you wish to give to personal financial information in advance of there being a need to handle your affairs.


Your child may have a specific care plan and daily routine, much of which only you may know. If you have not already done so, you should begin compiling a complete medical summary including ongoing medical, psychological and emotional needs, any medications and refill information, physicians, personal care providers, and any specialized therapy. Equally important is to provide a personal description of your child, from your perspective. How would you describe his or her unique personality? Is he shy, outgoing, cautious, or quick to laugh? Does she have a favorite keepsake, does he like to read, or share corny jokes? Are there special bedtime routines, favorite foods, activities, or games your child enjoys? The more you can share about your child and your life together, what works and what doesn’t in terms of a daily routine, the more you can ease the difficult transition your child and new caregiver will be facing after you are gone.

Of course, this only scratches the surface. We appreciate the extraordinary care parents and guardians of children or adults with different abilities provide their loved ones. While no one can replace you and the special bond you share, careful and thorough planning only helps to ensure a more gentle transition and that appropriate care for your child will be available long after you’re gone.

Every family’s circumstances and planning goals differ, and we work with families to help design personalized estate and long-term care plans that are uniquely tailored. Nothing takes the place of a conversation and if you’d like to learn more about the various planning options available, contact us for a personalized estate planning consultation.


Letter of Intent_Special Needs Planning