CALL TO ACTION
As an advocacy organization Concerned Advocates of New England tracks and follows key legislation on both the State and Federal Levels that either directly or indirectly (Unintended consequences) affects our LOVED ONES. This type of advocacy is essential for the safety and necessity of programs that support our LOVED ONES. It is also important that we monitor this legislation on both levels (State and Federal) in order to help preserve one of our most important value statements: ONE SIZE DOES NOT FIT ALL!
Two Examples of our efforts in Massachusetts:
A few years ago, I reached out to you our supporters on a bill called “Nicky’s Law”. Through your efforts and support this bill was eventually passed and a registry of substantiated abuse and neglect of individuals with I/DD was created.
Several years ago, our organization was part of a group of parent run organizations who advocated for individuals with I/DD. This group and through your efforts and support was able to pass a law that required the Department of Developmental Services to preform National Background Checks on new and existing employees.
Periodically the Concerned Advocates of New England will need your help. We may ask you to call, email or write to your State Legislators or Federal Legislators asking them to support or legislate against a particular Bill or Issue.
Concerned Advocates of New England will provide the templated language to use and, in many cases will leave a paragraph open for your “personal story”.
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Current Action Items
What is Guardianship?Guardianship is a legal process whereby someone is given the authority by the court to make decisions regarding major life decisions such as medical care, living arrangements, and sometimes financial management and act on behalf of a person who lacks the ability to comprehend and do those things for him/herself. The process is designed to protect an individual who cannot make decisions for himself/herself from being exploited, abused or neglected.
Do all persons need a guardian?No. Just because a person is mentally or physically disabled does not mean that he/she must have a guardian. A good question to ask is -- can he/she manage his/her personal affairs by making decisions regarding money, understand and sign consents for medical treatment or medications, etc.
Who appoints Guardians?Only a judge can appoint a guardian.
What does a Guardian do?Guardians make significant decisions for the individual, called a "ward" by the court. The decisions could include medical consents and consents for medical procedures. The guardian provides necessary legal consent for psychotropic medications, special programs, athletic events (Special Olympics), participation in educational and financial decisions and access to confidential records and reports. The guardian also has authority to speak for their ward in selecting appropriate living arrangements. Essentially, the guardian does the same sorts of things that a parent does for a child. A guardian is expected to visit and call to check on their ward and his/her care frequently. The guardian is required to renew their "Letters of Guardianship"; annually, by turning in a report to the court describing how their ward did during the previous year.
Are there different types of guardianships?Yes. A "guardian of the person" gives the guardian authority to make decisions about the ward's personal affairs. If the ward owns property or inherits property or an estate, the ward would also need a "guardian of the estate". In most cases only a guardian of the person is needed.
Are there any things that a Guardian cannot do for his/her Ward?Yes. The guardian cannot vote for the individual, cannot consent to sterilization, cannot voluntarily admit the ward for long term care nor interfere with marriage decisions.
Will I become responsible to cover all of my ward's cost of care if I become a guardian?No, you are only responsible for making appropriate decisions for your ward as needed.
How do I become the guardian of my family member with mental retardation?You may work through an attorney and make a request in the form of a petition (application) for your appointment to an appropriate Judge. The petition or application must include documentation of a thorough examination performed by a physician or psychologist that explains why the individual in incapacitated. Also the application should be filed in the county of residence of the individual who needs the guardian.
How much will it cost?The cost can vary depending on the circumstance such as if there is an estate.
How can I pay for it?If you do not have the money to pay the cost in full, ask the attorney if you can pay out the cost on a payment plan. Trust fund money can be used to defray the expense of seeking and maintaining guardianship.
One Size Does Not Fit All!!!
Senate bill S.2210 in its present form will incentivize discrimination against the most severely disabled…One Size Does Not Fit All!!!
Letter to your Senator Template:
Please oppose S. 2210 the Better Care Better Jobs Act in its present form. Please amend the bill to include the same added funding for "institutional care" in Intermediate Care Facilities (ICF's) as this bill gives for "community" HCBS services.
Senate bill S.2210 in its present form will incentivize discrimination against the most severely disabled.
Those who are medically fragile or who have severe neurological disorders leading to behavioral challenges require the ICF level of care as a medical necessity for their survival, safety and quality of life. This bill sets up an unequal funding structure that will incentivize states to eliminate ICF care in favor of privatized HCBS services. HCBS services are not up to the task of adequately caring for the most severely impaired. HCBS services have led to many documented cases of abuse, neglect and even death to the severely disabled or they will refuse services to clients with difficult and challenging medical and behavioral conditions, leaving beleaguered families with nowhere to turn. It is unequal justice to bestow the most amount of money on the least disabled and leave the most severely disabled to fend for themselves.
Additionally, the process by which this bill implements these social service policy changes is unfair. The Committee of jurisdiction for this bill does not allow stakeholder input and is not accessible to the very stakeholders that this bill affects. Please explain why this bill is being processed as a budgetary reconciliation item rather than a social services policy bill under the jurisdiction of the healthcare committees.
Thank you for your consideration in this matter.