The Alliance is a charity that helps families who have an ill child by guiding them through the many legal and financial problems they encounter. Here are some examples of how the Alliance has helped to better the lives of ill children:
- Obtained an emergency guardianship so that a child could be placed on the heart transplant list, which helped to save the child’s life;
- Successfully appealed a denial of Medi-Cal for a child who has cancer, allowing the child to receive life-saving medical treatment;
- Obtained Medi-Cal and cash benefits for three children who had lost or were going to lose their health insurance. One of these individuals, who has cerebral palsy, could not get her electric wheelchair fixed until the Alliance helped her to obtain Medi-Cal by adjusting her immigrant status;
- Won three SSI appeals for disabled children in 2015, providing them each with around $880 of income per month, helping them to stay in their homes with their families;
- On appeal obtained Regional Center services for a child with severe autism;
- Collaborated with Casa Cornelia to help a mother whose daughter had a brain tumor to obtain US status after domestic violence incidents;
- Prevented foreclosure for a family whose daughter has cancer, allowing the child to remain in a stable environment during her treatments and recovery;
- Counseled numerous families on health insurance, debt, and public benefits, which helped them to care for their ill children. Some of these children would not have health care today if it were not for the Alliance;
- Prevented a father of a child recovering from cancer from being deported. For the same family, the Alliance kept the family from being evicted from their home and obtained work authorization for the father so that he could support his family;
- Arranged “humanitarian parole” (a special non-immigrant status) for a family so that they would be allowed to travel to the U.S. be with their son who was dying of terminal cancer;
- Represented a mother at an unemployment hearing to ensure that she had that income to purchase gas to take her ill daughter to medical appointments;
- Helped several families obtain tax credits so that they would have money to provide care to their seriously ill children;
- Persuaded a reluctant employer to allow a father time off to be present at his son’s open heart surgery;
- Reversed many improper denials of public benefits so that children could receive life-saving health care and financial support;
- Trained 60 professionals on how to help ill children with their financial and legal needs; and
- Developed a “pathway out of poverty” strategy for a family who has a son who requires open- heart surgery every few years.
Karina’s Story, Alliance volunteers helping a father care for his child:
The Alliance partnered with the single father of a seriously ill two year old child to re-establish Supplemental Social Security Income (SSI) benefits and to appeal denials of In-Home Supportive Services (IHSS). The outcome of this partnership included the re-establishment of SSI benefits, and the ability for the child, Karina, to receive home care that reduces the likelihood of future hospitalizations. Additionally, Karina’s father uses the knowledge he developed advocating for his daughter to help other families facing similar bureaucratic hurdles.
Karina was only two weeks old when she had her first surgery, spending most of her first five months in the hospital. She was diagnosed with Pulmonary Hypertension, a chronic and currently incurable disease. Now Karina must receive a continuous infusion of medicine via a subcutaneous pump and be on oxygen 24 hours a day. She requires constant and attentive care, including continuous paramedical observation and assessment to monitor her oxygen levels and her subcutaneous pump.
The Social Security Administration administers SSI benefits for children with disabilities. Karina’s SSI benefits had been erroneously terminated, leaving her father without needed financial support to care for his daughter. With the help of Alliance volunteers Dennis McRoberts and Jim Dell, Karina’s father was able to get Karina’s SSI restarted and also to receive a retro-active SSI payment of over $5,000. SSI currently provides Karina with income support of $787 per month.
IHSS is a program that helps to reduce the need to hospitalize children by allowing them to be cared for in the home. Karina’s father had applied for IHSS benefits for Karina. These IHSS benefits were denied several times, primarily because of her young age. However, as the Alliance has successfully argued on behalf of several children, there is no age requirement in the legislation that created the IHSS program. Rather, the individualized disability needs of the child determine the hours of IHSS the child receives.
After the Alliance’s first appeal, Karina was found to qualify for the IHSS program and Karina was awarded 31 hours of IHSS support each month. While the appeal was a success, the number of hours of care allotted after the appeal did not reflect the nature and extent of Karina’s disability. After a second appeal was brought by Erin Minelli and Jim Dell of the Alliance, the Administrative Law Judge, in a 21 page decision, awarded Karina 257 hours per month, including retroactive pay of over $20,000.
Even with the favorable judgements in hand, additional steps are required in order to institute the IHSS payments. These steps can be challenging for parents. Karina’s father, a tireless advocate for his daughter, has assisted other families in how to navigate the IHSS program requirements.
Karina is a happy preschooler! She likes to play outside and to go to the park with her father. She has her own ideas, and enjoys finding music videos on the internet to dance to. Karina also drives a small electric jeep in her front yard, with her oxygen tank conveniently placed in the “trunk” of her car. Although she continues to face both day-to-day and long-term medical challenges, Karina and her father make a formidable team!
Jacob’s Story: Alliance Volunteers Help Parents Obtain Support for In-Home Care:
Chronic, incurable, CF affects Jacob’s lungs and digestive system, and it requires him to be hospitalized from time to time. At home, Jacob has special tools to help him cope with the CF’s most threatening symptoms. His special vest and a nebulizer help him breathe, and a gastronomy tube helps his body process food. But the biggest source of day-to-day help for Jacob is his parents’ loving care, and he would always prefer to be at home with them rather than in the hospital.
California has a special program called In-Home Supportive Services Plus Program (IHSS-Plus) that helps to reduce the need to hospitalize children by allowing them to be cared for by qualified family members in the home. The IHSS Plus Program pays parents to provide services at home for children who are qualified Medi-Cal recipients. The services include para medical care which means that the parent caregiver must receive special training from a qualified medical professional. IHSS-Plus is considered a preferred alternative to out-of-home care, such as nursing homes.
Jacob’s mom is trained to provide medical care Jacob needs both during the day and throughout the night. Jacob attends the local elementary school when he is not hospitalized. When home, Jacob has the opportunity to play with his sister and to participate in the day-today life of his family.
Jacob has a wonderful zest for life – he enjoys everything from playing drums to riding on roller coasters. (If he is not near his drum set, he’ll bang out interesting rhythms on boxes or whatever he can find!) He is popular at school and with the nurses at Rady Children’s Hospital who are impressed by how well Jacob understands the need for his treatments. As soon as he is out of the hospital, he is ready for more adventures with his family – whether heading to the mountains to play in the snow or watching movies together. He is great at getting other people to laugh with his funny expressions and magnetic personality.
The IHSS-Plus program is administered locally by the County of San Diego. The County denied Jacob’s family’s application for IHSS-Plus, stating (mistakenly) that Jacob did not require any more care than a child who is not disabled. A team of Alliance volunteers including Jim Dell , Krysta Cordill, Ron Kuczenski, and Ryan Sweeney, appealed the County’s decision. The Alliance was successful in its appeal on behalf of Jacob’s family, and the Administrative Law Judge reversed the County’s decision. Since then, Jacob has been able to spend more time at home, and his mother will receive the financial support and recognition for the high level of care that she is providing.
Jacob is just one of several IHSS-Plus cases that the Alliance has accepted on behalf of families with sick and injured children. The Alliance is proud of our success rate in helping families to better the lives of their children.
The Making of a Wish: A 6,000 Mile Odyssey
The Professional Alliance for Children (Alliance) teamed up with SD Make-A-Wish, the SD Ronald McDonald House, and Rady Children’s Hospital social workers to make the wish of a terminally ill child come true.
Our story begins when one of our attorneys was asked for help by a mother from an island far away. Her son was terminally ill here in San Diego, and his wish was to see his father and two brothers, who were back home on the island. The Alliance immediately began to work on the problem of getting the father, who is not a US citizen, and the two brothers to San Diego. The Alliance worked with the child’s social workers, the Ronald McDonald House, and Suzanne Albert of Make-A-Wish, who serendipitously Jon Beyrer and Jim Dell recently met at a Ronald McDonald House Collaborative Meeting.
Within five hours, the Alliance helped the father to obtain entry into the U.S. (through an immigration process known as “humanitarian parole”), and Make-A-Wish purchased three round-trip tickets for the family. The father and two sons flew out the very same day. And after a 6,357 mile journey, the father and brothers arrived the next day in San Diego, in time to be with their son/brother.
We thank Suzanne Albert of Make-A-Wish, social workers Anne Wiklund and Pam McKain of Rady Children’s, Sandy and Marienela Camarillo of the SD Ronald McDonald House, and attorney Susan Perez for making this wish come true!
Your support of these charities, who share the common mission of bettering the lives of ill children, made it possible to grant this child’s wish.