While there are endless concerns for parents of children with special needs, one of the greatest worries is who will care for them in the future.
With proposed Connecticut State budget cuts to the Department of Developmental Services (DDS) totaling millions of dollars, parents need to plan now to ensure quality care throughout the child’s lifetime.
“Generally, the parent of a child with special needs has two goals; to provide or source enough financial security to maintain the child’s quality of life now and after the parent is no longer here, and to develop a care plan that will secure the services, supports and care partners needed to support the child’s medical, therapeutic and developmental needs.” said Attorney Claudia Englisby, Head of the Disability Planning Department at CzepigaDalyPope.
Attorney Englisby notes that In order to make those goals a reality, there are 5 steps parents or guardians need to take.
First prepare a will, a Will is the most basic building block of an estate plan. The purpose of a Will is to designate how your estate should be distributed upon your death. Without a Will, the state makes all the decisions.
Secondly, designate a Power of Attorney, a power of attorney is a person or persons you grant the right to act on your behalf if you are incapacitated. Choose wisely. Your power of attorney has the same authority as you over your finances.
What happens when your child turns 18 and is no longer a minor?
If the young adult has the capacity to understand, have him or her grant you durable power of attorney and appoint you as the health care agent to allow you to continue to act on his or her behalf if necessary.
Parents should also name a Guardian for a minor child, and name a Plenary Guardian for a child with an intellectual disability
If a minor child’s parents or legal guardians pass away when the child is a minor, another person will need to become guardian of the minor child.
This should be done well in advance, and can be a designation in the parents’ Will. If a guardian is not appointed, a court may need to appoint someone.
If your child has an IQ lower than 69, or over 69 with adaptive needs, you may want to consider having a court appoint you as a Plenary Guardian.
A stand-by plenary guardian should also be appointed at the same time, so there is always someone available to care for the child. If you don’t appoint someone, the court will decide.
Another step is to create a special needs trust. A special needs trust will help to ensure that your child will have sufficient resources to live and to thrive.
There are several types of special needs trusts. The good news is you don’t have to be rich to set one up and you don’t have to fund it now.
Finally appoint a Trustee. Your child cannot, even if capable, manage the trust funds.
Furthermore, the funds used in the trust must be used properly to ensure eligibility for public benefits, services and supports are not jeopardized. The trustee you appoint is authorized to pay for a wide range of items, depending on the government benefit programs your child is receiving.
“Having the right plan in place is critical, particularly in our current political environment,” adds Englisby.
Developmental Disabilities Awareness Month in March calls on Americans to provide the encouragement and opportunities necessary for people with developmental disabilities to reach their potential. However, taxpayer-funded programs for people with disabilities nationwide are more at risk in today’s economic climate.
Medicaid, which has funded many employment and community-based residential programs, is also under fire.
The special needs planning attorneys at CzepigaDalyPope not only advocate for people with disabilities, they address the full spectrum of services needed to live secure, fulfilling lives.
They sort through all of the confusing options and create a plan that fits a family’s needs and resources, from utilizing special needs trusts, and asset protection strategies to preserve eligibility for the child for Medicaid and other needs-based programs.
“Our goal is to reduce the financial and emotional strain on families and eliminate parent’s frustration and uncertainty of not knowing what will happen to their child with special needs,” concludes Englisby.
Since 1998 CzepigaDalyPope has specialized in disability planning and probate litigation. Offices are located across Connecticut in Hartford, Berlin, Simsbury, South Windsor and New Milford.
For more information call (860) 236-7673
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